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Concerns, Desires and Expectations of Surgery for Adolescent Idiopathic Scoliosis:
A Comparison of Patients’, Parents’ & Surgeons’ Perspectives
by
Unni G. Narayanan
CAUTION! DANGEROUS CURVES AHEAD
A thesis submitted in conformity with the requirements
for the degree of Master of Science
in Clinial Epidemiology & Health Care Research
Graduate Department of Health Policy, Management & Evaluation
University of Toronto
© Copyright by Unni G. Narayanan (2008)
ii
Concerns, Desires and Expectations Of Surgery For Adolescent
Idiopathic Scoliosis: A Comparison Of Patients’, Parents’ & Surgeons’
Perspectives.
Master of Science, 2008
Unni G. Narayanan
Department of Health Policy, Management & Evaluation
University of Toronto
ABSTRACT
This study explored the concerns, desires (goals) and expectations of adolescents
undergoing surgery for idiopathic scoliosis, and contrasted their priorities with those of
their parents and surgeons. Parents were more concerned than their children about
the consequences of scoliosis and of surgery. With the exception of improving physical
appearance, surgeons' goals of surgery were different from those of either the patients
or parents. There was little agreement among surgeons about the natural history of
scoliosis, other goals of surgery and the likelihood of specific outcomes. Parents
wanted and expected more from surgery than their children. Parents and patients had
greater expectations of surgery than surgeons. Although adolescents had different
priorities from their parents, parents were aware of these differences and reliably
predicted their children’s priorities. These findings have important implications on
shared decision-making and informed consent, and might contribute to better
understanding and measurement of outcomes that matter to patients.
iii
ACKNOWLEDGEMENTS
This project has been a labour of love, that I could not have completed without the
encouragement, support, assistance and guidance of many individuals to whom I owe
a debt of gratitude.
At the top of that list is James Wright, my supervisor, mentor, colleague and friend. He
was instrumental in providing me the opportunities to launch my academic career and
ultimately made this possible. I am indebted to Jim for his sage advice, his incredibly
prompt feedback and for his infinite patience through this journey that must have felt
interminable.
I was fortunate in my choice of committee members. I am grateful to Dr. Brian
Feldman for his enthusiastic interest in the project, for his keen insight and guidance,
and above all for his encouragement and support throughout. It was Dr. Murray Krahn
who sparked my interest in the subject of shared decision making, and provided me
with a new appreciation for the perspective of the patient both from his teaching and
his research. Dr. Hilary Llewellyn Thomas, while not officially on my committee,
willingly provided me additional guidance in this area despite her relocation to
Dartmouth shortly before I began this journey. I am thankful to Brian, Murray and
Hilary for their support.
My colleagues in the Division of Orthopaedics at The Hospital for Sick Children have
been incredibly supportive. First William Cole and later Benjamin Alman in their
capacity as the Head of the Division with the support of Doug Hedden, Ben Alman, Jim
Wright and Andrew Howard provided me the protected time I needed to complete this
project. Doug Hedden, Ben Alman, Jim Wright and Andrew Howard not only
iv
contributed their patients to this study, also gave freely of their own time and effort to
participate in the pilot and final surgeon surveys. To them all, I am grateful.
This project would not have been possible without the help of Sam Donaldson, who, as
the research coordinator extraordinaire for the scoliosis trial, allowed me unfettered
access to participants and data. Sam’s assistance was invaluable and her interest in
this project most gratifying. I cannot thank her enough.
I am indebted to the participants of this study, the teenagers who were willing to
spend hours of their time to share their stories with me, and to their parents who did
the same. They opened my eyes and that experience has left an indelible influence on
the way I practice orthopaedic surgery. I wish these young women and men well.
Finally, this project could only be completed because of the tremendous sacrifices my
family has had to make. I could not ask more of my beloved wife, who made it possible
to for me to have the time to see this through, while providing me with the support,
encouragement and the right amount of goading to help me bring this to fruition. To
Anita and my adorable children Tara and Rohan who endured so much, I love you.
The project was generously funded through a two year Health Services Research
Fellowship award from the American Academy of Orthopaedic Surgeons & the
Orthopaedic Research & Education Foundation. Additional funding was obtained
through Trainee Start Up fund from The Hospital for Sick Children Foundation.
v
TABLE OF CONTENTS
Abstract ii
Acknowledgements iii
Table of Contents v
List of Figures xi
List of Tables xiii
Chapter 1 Introduction 1 1.1 Background 1
1.2 Purpose 4
1.3 Outline 4
Chapter 2 Adolescent Idiopathic Scoliosis 6
2.1 Background 6
2.2 Natural History & Clinical Course 6
2.3 Treatment Rationale 8
2.4 Treatment Options 8
2.5 Evaluation of Outcomes 9
2.6 Preferences: What do patients want 10
2.7 Preferences: What’s missing? 13
2.8 Rationale for this Project: Why bother? 14
2.9 Aims of Thesis 14
Chapter 3 Patient Priorities: Theoretical Perspectives 15
3.1 The Evolution of Patient-Centred Care 15
vi
3.2 Patient Preferences and Priorities 17
3.3 The Importance of Patient Priorities 18
3.4 Defining Expectations 20
3.5 Expectation & Satisfaction: Expectancy Disconfirmation 25
3.6 Issues in Measuring Patient Priorities 30
3.7 New Conceptual Framework 32
3.8 Summary 38
Chapter 4 Measurement of Concerns, Desires and Expectations 40
4.1 Introduction 40
4.2 Development of The Questionnaires 40
4.3 Patient Questionnaire 43
4.3.1 Section I 43
4.3.2 Section II 44
4.3.3 Section III 44
4.3.4 Section IV 45
4.3.5 Section V 46
4.3.6 Section VI 47
4.3.7 Section VII 48
4.3.8 Section VIII 49
4.4 Parental Questionnaire 51
4.5 Surgeon Questionnaire 52
4.5.1 Section I 52
4.5.2 Section II 52
4.5.3 Section III 52
4.5.4 Section IV 53
vii
4.5.5 Section V 53
4.5.6 Section VI 53
4.6 Summary 54
Chapter 5 Methods 56
5.1 Introduction 56
5.2 Study Design 56
5.3 Setting & Participants 56
5.4 Ethics Approval 57
5.5 Recruitment 58
5.6 The Interviews 58
5.7 Surgeon Survey 59
5.8 Analyses 60
5.8.1 Analysis of Concerns 60
5.8.2 Analysis of Desires (wishes) & Goals of Surgery 65
5.8.3 Analysis of Expectations of Surgery 69
5.8.4 Other Data 75
5.9 Sample Size and Power Estimation 76
5.10 Respondents 76
5.11 Non-Respondents 78
Chapter 6 Concerns Regarding Scoliosis & Surgery for Scoliosis 81
6.1 Concerns Regarding Scoliosis 81
6.1.1 Patient Concerns Regarding Scoliosis 81
6.1.2 Parents’ Concerns Regarding Scoliosis 84
6.1.3 Parents Perception of their Child’s Concerns 87
viii
6.1.4 Surgeons’ Concerns Regarding Scoliosis 88
6.1.5 Comparison of Patients’, Parents’ and Surgeons’ Concerns 90
6.2 Concerns Regarding Surgery for Scoliosis (Adverse Events) 94
6.2.1 Patients’ Concerns Regarding Surgery for Scoliosis 94
6.2.2 Parents’ Concerns Regarding Surgery for Scoliosis 96
6.2.3 Parents’ Perception of their Child’s Concerns 97
6.2.4 Comparison of Patients’, Parents’ and Parents’ Perception
of their Children’s Concerns 98
6.3 Summary 104
Chapter 7 Desires (Goals) of Surgery for Scoliosis 105
7.1 Patients’ Desires (wishes) of Surgery for Scoliosis 106
7.2 Parents’ Desires (wishes) of Surgery for Scoliosis 110
7.3 Parents’ Perception of their Children’s Desires (wishes)
of Surgery for Scoliosis 114
7. 4 Comparison of Patients’ & Parents’ Desires of Surgery 117
7.5 Surgeons’ Goals of Surgery for Scoliosis 120
7.6 Comparison of Patients’ and Parents’ Desires (wishes) with
Surgeons’ Goals of Surgery for Scoliosis 125
7.7 Summary 128
Chapter 8 Expectations of Natural History & Surgery for Scoliosis 130
8.1 Prior Expectations of Scoliosis: Perception of Natural History 130
8.1.1 Patients’ Prior Expectations of Scoliosis 131
8.1.2 Parents’ Prior Expectations of Scoliosis 134
8.1.3 Parents’ Perception of their Childs’ Prior Expectations 137
ix
8.1.4 Surgeons’ Expectations of Scoliosis 138
8.1.5 Comparison of Patients’, Parent’s and Surgeons’
Prior Expectations of Scoliosis 141
8.2 Expectations of Desired Outcomes of Surgery for Scoliosis 146
8.2.1 Patients’ Expectations of Surgery 147
8.2.2 Parents’ Expectations of Surgery 153
8.2.3 Surgeons’ Expectations of Surgery 159
8.2.4 Comparison of Patients’, Parent’s and Surgeons’
Expectations of Surgery 162
8.3 Expectations of Undesirable Events of Surgery for Scoliosis 168
8.3.1 Patients’ Expectations of Undesirable Events 169
8.3.2 Parents’ Expectations of Undesirable Events 171
8.3.3 Surgeons’ Expectations Undesirable Events 173
8.3.4 Comparison of Patients’, Parent’s and Surgeons’
Expectations of Undesirable Events of Surgery 175
8.4 Summary 177
Chapter 9 Discussion 180
9.1 Conclusions: Patient, Parent & Surgeon Priorities 180
9.2 Limitations 191
9.3 Summary of Findings & Significance of the Research 193
9.4 Future Research 198
References 200
x
Appendices 208
Appendix A Patient Consent Form & Questionnaire 208
Appendix B Parent Consent Form & Questionnaire 225
Appendix C Surgeon Survey Questionnaire 242
xi
LIST OF FIGURES
Figure 3.1 New conceptual framework 37
Figure 4.1 Linking the Questionnaire to the Conceptual Framework 50
Figure 6.1 Patients’ mean level of concerns overall and by domain 82
Figure 6.2 Parents’ mean level of concerns overall and by domain 85
Figure 6.3 Comparison of Patient’s, Parents’ and Surgeons’ concerns 91
Figure 6.4 Patient’s vs Parents’ perception of Child’s concerns 93
Figure 6.5 Patients’ vs Parents’ short-term concerns regarding surgery 99
Figure 6.6 Patients’ vs Parents’ long-term concerns regarding surgery 100
Figure 6.7 Patients’ vs Parents’ perception of Child’s short-term concerns
about surgery 102
Figure 6.8 Patients’ vs Parents’ perception of Child’s long-term concerns
about surgery 103
Figure 7.1 Patients’ mean strength of desires overall & by domain 106
Figure 7.2 Parents’ mean strength of desires overall & by domain 110
Figure 7.1 Patients’ mean strength of desires overall & by domain 106
Figure 7.3 Comparison of Patients’ & Parents’ Desires of Surgery 118
Figure 7.4 Patients’ vs Parent’s perception of their children’s desires 119
Figure 7.5 Surgeons’ Goals of Surgery 120
Figure 8.1 Patients’ Expectations regarding Scoliosis (natural history) 133
Figure 8.2 Parents’ Expectations regarding Scoliosis (natural history) 136
Figure 8.3 Surgeons’ Expectations regarding Scoliosis (natural history) 140
Figure 8.4 Patients’ vs Parents’ Expectations about Scoliosis (natural history)142
Figure 8.5 Patients’ vs Parents’ perception of their Children’s Expectations 143
Figure 8.6 Comparison of Patients’, Parents’ and Surgeons’ Expectations 145
Figure 8.7 Patients’ Expectations of (Desirable) Outcomes of Surgery 148
xii
Figure 8.8 Patients’ Expectations of Surgery: Minimal Acceptable Result to be
satisfied 152
Figure 8.9 Parents’ Expectations of (Desirable) Outcomes of Surgery 154
Figure 8.10 Parents’ Expectations of Surgery: Minimal Acceptable Result to be
satisfied 158
Figure 8.11 Surgeons’ Expectations of (Desirable) Outcomes of Surgery 162
Figure 8.12 Comparison of Patients’ vs Parents’ Expectations of (Desirable)
Outcomes of Surgery 164
Figure 8.13 Comparison of Patients’ vs Parents’ Expectations of Surgery: Minimal
Acceptable Result to be satisfied 165
Figure 8.14 Comparison of Patients’, Parents’ & Surgeons’ Expectations of
(Desirable) Outcomes of Surgery 166
Figure 8.15 Comparison of Patients’, Parents’ and Surgeons’ Expectations of
Undesirable events following Surgery 176
xiii
LIST OF TABLES
Table 6.1 Patients’ Concerns Regarding Scoliosis 82
Table 6.2 Parents’ Concerns Regarding Scoliosis 85
Table 6.3 Surgeons’ Concerns Regarding Scoliosis 88
Table 6.4 Comparison of Concerns Regarding Scoliosis 90
Table 6.5 Patients’ Concerns Regarding Surgery 95
Table 6.6 Parents’ Concerns Regarding Surgery 96
Table 6.7 Patients’ vs Parents’ Overall Concerns regarding Surgery 98
Table 6.8 Patients’ vs Parents’ perception of Child’s Concerns re Surgery 101
Table 7.1 Strength of Patients’ Desires for Goals of Surgery 108
Table 7.2 Patients’ Reasons for Surgery ranked in descending order 109
Table 7.3 Strength of Parents’ Desires for Goals of Surgery 112
Table 7.4 Parents’ Reasons for Surgery ranked in descending order 113
Table 7.5 Parents’ perceptions of their Children’s Desires of Surgery 115
Table 7.6 Parents’ Perception of their Children’s Reasons for Surgery ranked in
descending Order 116
Table 7.7 Comparison of Patients’ & Parents’ Desires of Surgery 117
Table 7.8 Surgeons’ Goals of Surgery in descending order of frequency 123
Table 7.9 Surgeons’ Goals of Surgery in descending order of importance 124
Table 7.10 Top 5 ranked Reasons for/Goals of Surgery for Patients, Parents &
Surgeons 125
Table 7.11 Comparison of Reasons for/Goals of Surgery for Patients, Parents &
Surgeons 127
Table 8.1 Patients’ Expectations regarding Scoliosis (natural history) 131
Table 8.2 Parents’ Expectations regarding Scoliosis (natural history) 134
Table 8.3 Parents’ Perception of their Childs’ prior Expectations of Scoliosis 137
xiv
Table 8.4 Surgeons’ Expectations regarding Scoliosis (natural history) 139
Table 8.5 Comparison of Patients’, Parents’ and Surgeons’ Expectations of
Scoliosis (natural history) 141
Table 8.6 Patients’ Expectations of (Desirable) Outcomes of Surgery 147
Table 8.7 Patients’ Expectations of Surgery: Minimal Acceptable Result to be
satisfied 151
Table 8.8 Parents’ Expectations of (Desirable) Outcomes of Surgery 153
Table 8.9 Parents’ Expectations of Surgery: Minimal Acceptable Result to be
satisfied 157
Table 8.10 Surgeons’ Expectations of (Desirable) Outcomes of Surgery 161
Table 8.11 Comparison of Patients’, Parents’ and Surgeons’ Expectations of
(Desirable) Outcomes of Surgery 163
Table 8.12 Patients’ Expectations (likelihood) of Undesirable Events following
Surgery 170
Table 8.13 Parents’ Expectations (likelihood) of Undesirable Events following
Surgery 172
Table 8.14 Surgeons’ Expectations (likelihood) of Undesirable Events following
Surgery 174
Table 8.15 Comparison of Patients’, Parents’ and Surgeons’ Expectations of
Undesirable events following Surgery 175
1
CHAPTER 1
Introduction
1.1 Background
Adolescent idiopathic scoliosis (AIS) is characterized by an abnormal curvature of the
spine acquired between puberty and skeletal maturity. AIS is the most prevalent
musculoskeletal deformity affecting children (Kelsey 1982). The primary problem
associated with idiopathic scoliosis is the effect of the spinal deformity on physical
appearance. Less clear is the potential relationship of idiopathic scoliosis with late onset
of back pain, restrictive lung disease, and cor pulmonale (Nachemson 1968; Nilsonne
and Lundgren 1968; Weinstein, Zavala et al. 1981; Weinstein, Dolan et al. 2003).
Treatment of AIS is primarily recommended to prevent progression of the deformity
and/or to correct existing deformity. Decisions regarding treatment of scoliosis are often
made in the absence of any symptoms or perceived difficulties in order to avoid potential
future problems that the patient (or parents) may never experience. Surgical treatment
of scoliosis is a major undertaking with significant risks and unclear long term
consequences. Furthermore, in the face of uncertainty about the natural history of
untreated idiopathic scoliosis for individual patients, their concerns, desires and
expectations ought to be considered when making decisions about treatment. Yet, little
is known about the priorities of patients undergoing surgery for scoliosis. Consequently,
these issues are seldom elaborated during patient-surgeon interactions nor can they be
incorporated in outcome measures to quantify the benefits relevant to patients following
surgical treatment.
The concept of health, traditionally represented by a medical model, was originally
defined as the absence of disease. In recent years, newer models have been proposed
2
that attempt to reflect the full complexity of health, by incorporating a more holistic
account of the human experience, and by recognizing individual rights and
empowerment (Larson 1999; WHO 2001). This evolution in the conceptualization of
health has been accompanied by changes in the way we measure health and disease,
reflected by an array of outcome measures that quantify a wide range of health-related
phenomena, including physical and psycho-social function, patient satisfaction and
quality of life (Greenfield and Nelson 1992). Interest in patients’ perspectives and the
concepts of patient-centred care have grown (Gerteis, Edgman-Levitan et al. 1993) with
our understanding that the impact of health-care interventions are more meaningfully
assessed using patient-based outcome measures. Equally important, are patients’
perspectives prior to, and during their care to allow the incorporation of their values or
preferences during the process of medical decision making (1993; Kassirer 1994).
Patient preferences are values expressed by patients for particular health states or
outcomes, which influence their choice (or preference) for specific treatment options
(Bowling and Ebrahim 2001). Knowledge of patient preferences is essential for shared
(patient-doctor) decision making, which is believed to enhance the quality of health care
(O'Connor, Rostom et al. 1999). Patients’ preferences are influenced by concerns about
their medical condition and its treatment, their wishes or desires, and their expectations
of the treatment and its outcomes (Uhlmann, Inui et al. 1984; Kravitz 1996). Patient
priorities (desires and expectations) also play an important role in the formulation of
patient satisfaction (Thompson and Sunol 1995). Achieving patient satisfaction is not
only an important goal but is also considered one of the key indicators of the quality of
care received (Donabedian 1982). Addressing patients’ priorities by alleviating their
concerns, fulfilling their wishes and meeting their expectations are desirable goals in
themselves (Carr-Hill 1992). Moreover, the process of eliciting patients’ priorities during
3
the shared medical decision-making process may also contribute to patient satisfaction
(Fitzpatrick and Hopkins 1983). Finally, understanding patients’ priorities is essential for
the development of patient-based outcome measures. Patient-based outcomes
instruments will only be meaningful if the questions asked of patients reflect what’s
relevant and important to them (Amadio 1993; Wright, Rudicel et al. 1994).
Little is known about patient concerns, desires and expectations in the context of
childhood diseases. For example, how well are children’s priorities and preferences
understood or even taken into consideration during medical decision making? Parents
most often make decisions on behalf of their children, but are their concerns, desires
and expectations the same as those of their children? Whose perspective matters
most? Is this information even important or useful? Little is known about parental
expectations and whether they are concordant with their children’s expectations. If
indeed the goal of patient participation in decision making is desirable, and the
incorporation of patient preferences important, then the knowledge of patient priorities
becomes essential (Bowling and Ebrahim 2001). Similarly, if patient satisfaction with
outcome is an important goal, then an understanding of patient concerns, desires and
expectations becomes imperative (Carr-Hill 1992). The elicitation of patients’ priorities
might provide important insight into hitherto unknown patient preferences which in turn
might influence the process of informed choice and decision making, true informed
consent, and facilitate the evaluation of outcomes that matter most to patients (Entwistle,
Renfrew et al. 1998).
4
1.2 Purpose
The purpose of this thesis was to determine adolescents’ concerns about their scoliosis,
their desires and expectations of treatment, and to contrast their priorities with those of
their parents and their surgeons.
1.3 Outline
Chapter 2 provides background information about adolescent idiopathic scoliosis, and
reviews what’s known about the natural history of the condition. The indications for
treatment and the treatment options are discussed. The literature on patient priorities
and preferences, as it pertains to adolescent idiopathic scoliosis, is reviewed and the
limitations discussed. The chapter elaborates on the rationale for selecting idiopathic
scoliosis to study these phenomena and concludes with an outline of the specific
objectives of this thesis.
In Chapter 3 the literature on patient priorities is reviewed. Definitions for the concepts
of patient concerns, desires and expectations are discussed. The chapter outlines the
theories and empirical evidence that link these components of priorities to patient
satisfaction. Issues pertaining to the measurement of patient priorities are discussed,
which influenced the methods employed in this research. A new conceptual framework
is presented, which provides the foundation for this investigation.
Chapter 4 describes the first phase of the project, which involved the development of
three versions of the questionnaire to measure the constructs mentioned above, in
patients, parents and surgeons respectively. The questionnaires were developed based
on the the conceptual framework described in Chapter 3.
5
Chapter 5 describes the objectives and methods employed for the second and third
phases of this research. Questionnaires were used in the second stage for the separate
structured interviews of adolescent children with scoliosis and their parents. Surgeons,
who treated these patients, were provided with a self-administered version of the
questionnaire. In the third phase, a national survey of all surgeons treating idiopathic
scoliosis was conducted. Specific hypotheses were articulated and the types of
analyses described. Finally, the participants of the study and the interview process are
described.
Chapters 6 – 8 describe the study results. Chapter 6 describes and compares the
concerns reported by children, their parents and surgeons about the perceived problems
of scoliosis, and also their respective concerns about the potential undesirable or
adverse events of surgery for scoliosis. Chapter 7 describes the findings pertaining to
patients’ and parents’ desires (wishes) of surgery for scoliosis, which are compared with
surgeons’ reported goals of surgery. In Chapter 8, expectations about the natural history
of untreated idiopathic scoliosis are described from patients’, parents’ and surgeons’
perspectives, followed by a description and comparison of their expectations of the
desired and undesirable outcomes of the surgical treatment of scoliosis.
Chapter 9 discusses the conclusions of this study and the implications of these findings,
including the application of these methods to other areas of paediatric musculoskeletal
conditions, where the knowledge of patients’ and parents’ priorities might play an
important part in influencing shared decision making, and our understanding of patient-
based outcomes. Limitations of the research methods are discussed. Finally, future
research is discussed.
6
CHAPTER 2
Adolescent Idiopathic Scoliosis
2.1 Background
Adolescent idiopathic scoliosis (AIS) is the most prevalent musculoskeletal deformity
affecting children (Kelsey 1982). Scoliosis is defined by an abnormal curvature of the
spine that measures at least 10 degrees on an antero-posterior radiograph. The
curvature is the result of a 3-dimensional deformity most apparent in the coronal plane
(from the back or front). Although abnormalities of the neuromuscular system have been
described, the etiology of idiopathic scoliosis, as the name implies, remains largely
unknown. AIS most often has its onset between puberty and skeletal maturity. The
estimated prevalence of idiopathic scoliosis is 3 – 9 per 1000 adolescents, with girls
affected 5 times more frequently than boys (Morais, Bernier et al. 1985).
2.2 Natural History & Clinical Course
Knowledge of the consequences of untreated scoliosis is incomplete (Nachemson 1968;
Nilsonne and Lundgren 1968; Weinstein, Zavala et al. 1981; Weinstein 1986; Weinstein,
Dolan et al. 2003). The deformity may be static or become progressively worse with
time. The rate of progression of the curve and its final magnitude are variable and
related to skeletal growth as well as the size of the curve at any given time.
Progression may halt or slow-down with the completion of spinal growth at skeletal
maturity (Rogala, Drummond et al. 1978; Lonstein and Carlson 1984; Bunnell 1986).
The deformity associated with AIS effects patients’ physical appearance. The deformity
has been associated with significant psychological consequences (Bengtsson, Fallstrom
et al. 1974; Kahanovitz and Weiser 1989).
7
In addition to the deformity, scoliosis may result in cardio-pulmonary dysfunction.
However, clinically significant reduction of pulmonary function, due to restrictive lung
disease and secondary cor pulmonale, occurs only with severe thoracic curves
(Bergofsky, Turino et al. 1959; Pehrsson, Bake et al. 1991; Pehrsson, Larsson et al.
1992). Furthermore, the studies reporting this association may have been confounded
by the presence of other concomitant pulmonary or cardiac conditions or age related
causes of deconditioning (Weinstein, Zavala et al. 1981; Branthwaite 1986).
The association of increased back pain with scoliosis is also controversial. While reports
from Scandinavia have shown twice the rate of disability due to back pain in this
population (Nachemson 1968; Nilsonne and Lundgren 1968), a long term study of
untreated idiopathic scoliosis patients in Iowa showed minimal increase in the overall
rate of back pain when compared to the reported incidence in an age-matched control
group without scoliosis Although backache was slightly more common in adults with
scoliosis, the rate of disabling back pain requiring either a doctor’s appointment or
hospitalization was more common in the control group (Weinstein, Zavala et al. 1981).
At 50 years of follow-up, however, approximately 60% of those with untreated idiopathic
scoliosis reported chronic back pain compared with 35% of a (different) group of age-
and sex-matched controls without scoliosis. Of those who reported pain, approximately
two-thirds had only mild or moderate pain in both groups (Weinstein, Dolan et al. 2003).
Although patients with idiopathic scoliosis in some cross-sectional studies have had
reduced exercise capacity (endurance time) and work capacity (Chong, Letts et al. 1981;
Kearon, Viviani et al. 1993), their daily function is similar to that of the general
population.
8
Older studies that reported higher than predicted mortality rates for scoliosis patients,
were confounded by the inclusion of patients with congenital and neuromuscular
scoliosis (Weinstein, Zavala et al. 1981). More recent studies have shown that
adolescent idiopathic scoliosis patients are not at increased risk for early death
(Pehrsson, Larsson et al. 1992; Weinstein, Dolan et al. 2003).
2.3 Treatment Rationale
Some orthopaedic surgeons believe that the most important indication for treatment of
idiopathic scoliosis is the physical appearance or “cosmetic” concern associated with the
deformity. The objectives of treatment, therefore, are to achieve correction of an existing
deformity or to prevent a worse deformity in the future. Others believe that prevention of
future cardiopulmonary dysfunction and future back pain are the primary reasons for
aggressive treatment of scoliosis (Lonstein 1996). As discussed, this rationale is more
controversial because it is not entirely clear that these risks are the result of untreated
progressive scoliosis. Moreover, and more importantly, the evidence that surgery
reduces these risks remains elusive (Poitras, Mayo et al. 1994).
2.4 Treatment Options
Treatment options of adolescent idiopathic scoliosis include observation, bracing or
surgery. Small and non-progressive curves are “treated” by observation. Patients are
monitored by clinical and radiographic evaluations at intervals ranging from four to nine
months. In skeletally immature (growing) children, moderate curves with the potential to
progress, or smaller curves that have progressed, are treated with braces. Spinal fusion
is reserved for larger curves or those that progress despite bracing. Both currently
available forms of intervention, bracing and surgery, are physically, emotionally and
psychologically demanding (Fallstrom, Cochran et al. 1986; Kahanovitz and Weiser
9
1989; MacLean, Green et al. 1989). The typical brace is a rigid body jacket, worn under
clothing, usually recommended for full time daily use (ideally more than 20 out of 24
hours each day). Surgery involves an instrumented fusion of the spine across multiple
segments, which is associated with small but significant risks including paraplegia.
2.5 Evaluation of Outcomes
The evaluation of the treatment of scoliosis has traditionally focused on technical
outcomes, such as radiographic measurements of curve magnitude and spinal balance.
More recent attention has been paid to patient-oriented outcomes, including patient
satisfaction. Two disease specific instruments that incorporate patient oriented outcome
measures have been developed and validated. The Quality of Life Profile for Spinal
Deformities (QLPSD) and the Scoliosis Research Society (SRS) Surgical Outcomes
questionnaire (Climent, Reig et al. 1995; Haher, Gorup et al. 1999). The latter was
developed specifically to evaluate and compare the results of surgery for idiopathic
scoliosis and to determine patient satisfaction. These instruments are increasingly being
used to report outcomes (Climent and Sanchez 1999; White, Asher et al. 1999).
The relationship between objective technical and subjective patient-based outcomes
remains unclear. In a meta-analysis of the English literature on the surgical treatment of
adolescent idiopathic scoliosis, Haher et al compared measures of patient satisfaction
with “process measures of care” (Haher, Merola et al. 1995). By process measures, the
authors referred to radiographic measures of outcome including magnitude of correction
in degrees and percent correction in the coronal plane. Although they found that patient
satisfaction best correlated with the degree of curve correction, this study was flawed in
many respects. Inclusion criteria for studies in this “meta-analysis” were not defined on
the basis of quality. Consequently, the quality of studies included in this review was
10
variable, and included few prospective studies and no randomized trials. Patient
satisfaction was not uniformly measured in the studies that were selected. In several
studies, patient satisfaction was substituted by a variety of proxy outcome variables that
were assumed to represent satisfaction, raising serious concerns about the validity of
the analyses. Finally, examination of the data suggests that the high correlation found
between magnitude of correction and patient satisfaction may have been spurious,
influenced in large part by outliers.
With the use of better standardized instruments such as the SRS outcomes
questionnaire, little correlation has been demonstrated between clinical outcomes,
including patient satisfaction, and conventionally defined radiographic measures of
success (D'Andrea, Betz et al. 2000). Radiographic measurements have also been
shown to correlate poorly with objective measures of cosmesis (Theologis, Jefferson et
al. 1993). Therefore, these conventional radiographic measures cannot be assumed to
correspond with patients’ perceptions of their outcomes.
2.6 Preferences: What do Patients Want?
In the context of idiopathic scoliosis outcomes instruments, the measurement of patient
satisfaction with outcome has not been based on a theoretical framework. Little
attention has been paid to the preconditions and possible determinants of patient
satisfaction, which include patient priorities and preferences.
Bunch and Chapman explicitly explored patient preferences in decision making for
surgical treatment of adolescent idiopathic scoliosis (Bunch and Chapman 1985). Using
a multi-attribute utility model, they assessed patient preferences for two techniques of
surgical treatment by measuring their utilities for specifically selected attributes. The two
11
surgical techniques were the conventional Harrington rod instrumentation followed by
casting, and Luque sub-laminar instrumentation without post-operative casting. The
following four attributes were selected: the nature of after-care, the risk of reoperation,
the risk of nerve damage, and the percentage of curve correction. Preferences were
elicited from a heterogenous group of patients, one or both their parents, a group of
orthotists and orthopaedic surgeons. In considering which type of surgery to have,
avoiding major post-operative complications such as nerve damage and reoperation
were deemed to be more important than the percentage of curve correction achievable
or the need for post-operative immobilization. There was remarkable similarity across all
four groups, in the rating of the relative importance of the four attributes. The authors
concluded that the values of surgeons, patients and family members are virtually
identical and that surgeons could serve as a good proxy for the “informed” patient.
The study of Bunch and Chapman had several limitations. First, the analysis was
framed in the constrained context of the four selected attributes which were chosen by
the surgeons, not by patients. The assumption that patients would value these chosen
attributes as the most important ones to consider in making their decision imposes the
surgeons’ perspective on the process, and ignores other factors that patients might wish
to consider. For instance, we know that patients do not evaluate their outcomes based
on radiographic criteria, much less the percentage of curve correction. Second, at best
this study informs us about what patients most wish to avoid, but it still leaves us unclear
about what it is they do want. Finally, the relevance of the study is limited because both
these surgical procedures have long since been replaced by a new generation of
powerful instrumentation techniques that obviates the need for post-operative
immobilization and avoids the increased risk of neurologic damage associated with sub-
laminar wiring. These technical advances have, however, not been accompanied by an
12
improved understanding of the priorities and preferences of patients with adolescent
idiopathic scoliosis.
Bridwell et al performed a cross-sectional survey of a pre-operative cohort of patients
with idiopathic scoliosis, and their parents, from four different centres in the United
States, in order to assess independently, patients’ and parents’ concerns about surgery,
reasons for having surgery and their expectations for treatment, and scar preference
(Bridwell, Shufflebarger et al. 2000). Although patients and parents had similar concerns
regarding surgery and similar expectations overall, individual patients tended to have
different reasons for surgery and different concerns and expectations regarding surgery
than their parents. However, these differences were small. This study has several
limitations. First, the constructs of concerns and expectations were not defined and their
operationalization did not appear to be based on any conceptual framework. Second,
the development of the questionnaire was not described. The items were presumably
generated by the investigators, with no reported patient or parental involvement to
ensure that issues relevant to them were included in the questionnaire. This imposition
of surgeons’ values has the potential for biasing the conclusions. One is still left
wondering if the most important priorities identified in this study would indeed be the
same had the patients been asked directly. Third, some of the items were quite
technical in their wording. Fourth, there was no description of any validation of the
questionnaire, which was self-administered. For these reasons, it is conceivable that
items might have been interpreted differently by different participants, and the same
responses of different participants might mean different things. Fifth, the authors
reported some incomplete responses, while they chose to ignore other responses
because they assumed that the respondent “did not seem to have a full understanding of
the questions asked”. Sixth, no a priori hypotheses were declared and the multiple
13
comparisons threaten the credibility of the study’s conclusions. Nonetheless, this is the
first published contemporary study that seeks to explore these important questions
related to patients’ and parental priorities and preferences.
2.7 Patient Preferences: What’s Missing?
Little is known about how adolescents with scoliosis view their condition, what they
believe are its consequences, and how these may be of concern to them. In the study
by Bridwell et al, patient concerns were limited to the risks or complications of surgery
and did not pertain to the actual diagnosis and the perceived consequences of idiopathic
scoliosis (Bridwell, Shufflebarger et al. 2000). The goal of treatment of idiopathic
scoliosis is often preventive, and therefore decisions are made in the absence of any
experienced (or even perceived) problem at the time, in order to avoid potential future
problems that the patient (or parents) may never come to experience. How does this
impact on patients’ priorities? Orthopaedic surgeons have a superficial understanding of
what patients want from their treatment and what their expectations are of these
interventions. Furthermore, we do not know how these factors influence their perception
of their outcomes, including satisfaction. Undoubtedly, parents’ concerns and desires
influence, if not direct, decision-making. Parents’ priorities may be distinct from those of
their children. We don’t know much about parental expectations either or whose
perspective matters most? Are patients’ and parents’ priorities concordant with
surgeons’ goals and expectations? Is the surgeon’s perspective indeed a good proxy for
the patient’s priorities and preferences, as suggested by Bunch et al (Bunch and
Chapman 1985)?
14
2.8 Rationale for this Project: Why bother?
AIS is an appropriate and convenient model to study patient priorities and preferences.
The patients are old enough to articulate their concerns, wishes and expectations, yet
they are not old enough to make decisions completely independent of their parents. The
natural history of untreated scoliosis and long term outcomes of treatment are uncertain.
As discussed above, since an important goal of surgery is cosmesis and the surgical
treatment is not without some significant risks and adverse effects, the decision to
proceed with the operation in some surgeons’ minds is discretionary. Under these
circumstances of uncertainty, an understanding and consideration of patients’ priorities
and their preferences becomes all the more important. The knowledge of patients’
concerns, what they want, what they expect and how their priorities differ from their
parents’ might provide important insight into hitherto unknown patient preferences, which
in turn might influence decision making, guide the process of informed consent and
facilitate the evaluation of outcomes that matter most to patients. This may improve the
quality of care they receive and may contribute to increased patient satisfaction.
2.9 Aims of Thesis
The purpose of this thesis was to address the following specific aims:
1. Describe and compare patients’, parents’ and surgeons’ concerns about scoliosis, as
well as concerns about its surgical treatment;
2. Describe and compare patients’ and parents’ desires (wishes) of the surgical
treatment of scoliosis with the surgeons’ goals of treatment;
3. Describe and compare patients’, parents’ and surgeons’ expectations of desired and
undesirable outcomes of surgical treatment of scoliosis.
15
CHAPTER 3 Patient Priorities: Theoretical Perspectives
3.1 Changing Paradigms: The Evolution of Patient-Centred Care
The obligation to relieve or prevent human suffering remains the cornerstone of the
practice of medicine. The science of medicine, on the other hand, has traditionally
focused on treating disease based on pathological anatomy and abnormal physiology
(Virchov 1923). The “disease” is an anatomicopathologic entity that objectifies the
patient’s illness. This model has been invaluable in advancing medical science and
technology but often at the expense of a fuller understanding of illness in more human
terms of the patient’s experience (Feinstein 1983; Baron 1985). The fundamental goal
of medicine, which is to relieve (or prevent) suffering, is often taken for granted or,
sometimes, forgotten altogether. Suffering, which is a subjective experience, may or
may not respond to interventions directed toward pathologic processes, even when
these regimens are technically effective (Cassel 1982). The phenomenon of the “cure”
being worse than the disease is not uncommon.
The traditional medical model that emphasizes “disease” has gradually been replaced by
models of health that emphasize function and well being in the physical, mental, and
social dimensions, health promotion and disease prevention, and individual rights and
empowerment (Larson 1999; WHO 2001). The current paradigm of patient autonomy
and consumerism has led to the recognition of the importance of patients’ perspectives
in all stages of the medical encounter (Gerteis, Edgman-Levitan et al. 1993). The
emphasis on the ethical dimensions of health care has gained as much prominence as
rigorous biomedical science (Forrow, Wartman et al. 1988).
16
The impact of these changes has been felt in all aspects of modern medicine. The
paternalistic approach that once characterized the traditional physician-patient
relationship during a medical encounter is gradually transforming to one of increasing
patient participation (Brody 1980; Kassirer 1983; Deber 1994). The doctrine of informed
consent (Faden and Beauchamp 1986) and more recently the concepts of patient
preferences and shared decision-making (Charles, Gafni et al. 1997) are products of this
evolution. The growth of the outcomes research movement was fuelled by the need “to
sort out what works in medicine and to learn how to make clinical decisions that reflect
more truly the needs and wants of the individual patients” (Wennberg 1990). The
recognition of outcomes that are meaningful to patients, such as quality of life, function
and patient satisfaction, and the development of instruments to measure these
outcomes has been a consequence of this movement.
The principles of patient welfare and autonomy have become enshrined in the codes of
medical ethics (Childress 1989) and the new Charter for professional medical practice
(2002). According to this Charter, the three fundamental principles to guide the practice
of medicine are:
1. The principle of primacy of patient welfare, which is based on a dedication to serving
the interest of the patient.
2. The principle of patient autonomy, which recognizes that patients’ decisions about
their care must be paramount, as long as these decisions are in keeping with ethical
practice and do not lead to demands for inappropriate care. Physicians should have
respect for patient autonomy. They must be honest with their patients and empower
them to make informed decisions about their treatment.
3. The principle of social justice, which requires that the medical profession promote
justice in the health care system, including fair distribution of heath care resources.
17
3.2 Patient Priorities and Preferences
Consistent with the current paradigm of patient autonomy and consumerism, is the
growing body of research dealing with patient preferences (Kassirer 1994) and patients’
concerns, desires and expectations for medical care (Kravitz 1984; Kravitz 1996). The
term “patient preferences” refers to the values expressed by patients for particular health
states or outcomes, which influence their choice (preference) of treatment after
consideration of the risks and benefits associated with competing treatment options
(Bowling and Ebrahim 2001). Patient preferences are central to current models of
shared decision making by patient and physician. Shared decision making, which
involves informed choice, is believed to enhance the quality of health care and may also
be associated with better adherence to treatment and higher levels of patient satisfaction
(O'Connor, Rostom et al. 1999).
“Patient priorities” refers collectively to patients’ concerns about their health status (or
medical condition), their desires (wishes and perceived needs), and their expectations of
treatment and its outcomes. Patient preferences are influenced by their priorities
(Uhlmann, Inui et al. 1984; Kravitz 1996). Therefore, the elicitation of patient
preferences should include an exploration of the patient’s concerns, desires and
expectations to provide the appropriate context for these preferences. This process also
provides insight into individual patients’ priorities, which can ensure that clinical
decisions are made on the basis of properly informed choice.
Patient desires and expectations may play an important role in the formulation of patient
satisfaction (Thompson and Sunol 1995). One theory of patient satisfaction is that it is a
subjective judgment resulting from the appraisal by an individual of the extent to which
the care received has met that individual’s expectations and preferences (Brennan
18
1995). Patient satisfaction has been considered to be one of the key indicators of the
quality of care (Donabedian 1982). Although some doubt has been cast on whether
patient expectations and preferences are related to the final appraisal of patient
satisfaction (Carr-Hill 1992; Ross, Steward et al. 1993; Williams 1994), an
understanding of patients’ priorities and addressing these by alleviating their concerns,
fulfilling their wishes and meeting their expectations are desirable goals in themselves,
and remain fundamental to the practice of medicine (Cleary and McNeil 1988; Carr-Hill
1992).
3.3 The Importance of Patient Priorities
There are several reasons why the elicitation of patients’ priorities is important both in
general and when applied specifically to the management of idiopathic scoliosis.
Eliciting goals and expectations from patients is crucial for making clinical decisions in
which preferences play a role (Hornberger, Habraken et al. 1995; Mancuso, Altchek et
al. 2002). Rational choices of treatment depend on how patients view their predicament
and on their attitudes about risks and benefits of treatment. In the face of uncertainty
about the natural history for individual patients and of the long term outcomes of surgical
treatment, the indications for surgery for adolescent idiopathic scoliosis are somewhat
discretionary and therefore should incorporate patients’ (and parents’) concerns weighed
against the risks of the intervention. Patients concerns may focus on specific aspects of
their physical deformity. Different aspects of an individual patient’s deformity lend
themselves to particular interventions during surgery. Eliciting patients’ expectations,
therefore, creates opportunities for clinical negotiation (Lazare, Eisenthal et al. 1975).
These processes can shed light on unrealistic or erroneous expectations and can
provide the impetus for more effective patient education, which should be the basis for
informed consent. The elicitation of patient priorities also enhances patients’ active role
19
in the medical relationship, which has been shown to improve outcomes (Greenfield,
Kaplan et al. 1985). Although meeting patients’ expectations is believed to produce
greater satisfaction, the actual process of eliciting patients’ priorities during the shared
medical decision-making process may be more of an influential determinant of patient
satisfaction, than the fulfillment of patient wishes and expectations (Fitzpatrick and
Hopkins 1983). Higher satisfaction in turn is associated with benefits such as greater
adherence to therapy (Sherbourne, Sturm et al. 1999), less doctor shopping (Ware and
Davies 1983) and lower likelihood of being sued for malpractice (Hickson, Clayton et al.
1994).
Knowledge of patients’ priorities also has important implications for health research.
Incorporating the “lay” perspective, which includes patients’ input, provides insight that
can influence research priorities, identify problems relevant to patients, influence
research design and execution, and help with the interpretation, dissemination and
implementation of research findings (Entwistle, Renfrew et al. 1998). An understanding
of patients’ priorities is also important for the development of patient-based outcome
measures. Patient-based outcomes instruments will only be meaningful if the questions
asked of patients reflect what’s relevant and important to them (Amadio 1993). In a pilot
study, candidates for total hip arthroplasty were interviewed to identify their main
reasons for undergoing surgery. Of the 16 complaints identified, four of these were
noted to be absent from any of the six hip-rating scales in general use at the time
(Wright, Rudicel et al. 1994). This work led to the development of a new outcome
measure that incorporated the preferences of individual patients (Wright and Young
1997). Disease-specific measures of patient expectations have also been developed
(Mancuso, Sculco et al. 2001; Mancuso, Altchek et al. 2002). The role of patients’
expectations have been explored (as independent variables) in studies about the
20
determinants of patient satisfaction or quality of care (Uhlmann, Inui et al. 1984;
Thompson and Sunol 1995). For example, patient satisfaction following total hip
arthroplasty was affected by their expectations as well as by their outcome (Mancuso,
Salvati et al. 1997). Expectations can also be used as the dependent variable in studies
of how patients’ expectations develop. For instance, older patients, men, and those with
worse pre-operative functional status had greater pre-operative expectations of total hip
arthroplasty (Mancuso, Sculco et al. 2003).
From a policy perspective, understanding patients’ expectations is important for
measuring measurement of health care quality, delivery of health services, the costs of
care (Kravitz, Callahan et al. 1996). Misguided or unrealistic expectations may increase
health care utilization and costs while providing little net benefit (Woolf and Kamerow
1990).
3.4 Defining Expectations
Patient concerns, desires and expectations have been defined and conceptualized in
many different ways. Thompson and Sunol reviewed the literature from the disciplines
of psychology, sociology, social policy, health care, and marketing, and identified four
types of user expectations. Common to all is that expectations are beliefs, and
therefore, products of cognitive processes (Thompson and Sunol 1995).
1. Ideal expectations are those that users would like to happen and can be referred to
as aspirations, desires, wishes, wants or the preferred outcomes (Friedson 1961).
Patients derive these expectations based on their perception and evaluation of their
problem and seek care to realize certain goals. An adolescent with idiopathic
scoliosis may desire perfect symmetry and full flexibility of her back and seeks
treatment to accomplish these goals.
21
2. Practical or Predicted expectations, on the other hand, are what users believe will
happen, described as the realistic, or anticipated outcomes. These are influenced by
personal experience, knowledge of others’ experience and from other sources of
information such as the doctor or the media (Friedson 1961). The adolescent with
idiopathic scoliosis may anticipate improved symmetry, and some loss of flexibility of
her back following surgery.
3. Normative expectations are those that users believe ought to or should happen
based on what they believe they deserve and or on what is socially endorsed. The
adolescent with idiopathic scoliosis may have the expectation that following surgery
her back should be “normal”.
4. Unformed expectations occur when users are unable or unwilling to articulate their
expectations due to fear, anxiety, conformity to social norms, or lack of knowledge or
experience to formulate expectations (West 1976). This may be temporary
phenomenon, but quite common in the health care context.
In marketing research, customers have been shown to have two levels of expectations
(Parasuraman, Zeithaml et al. 1991). Desired expectations are defined in terms of
what “should be” and “can be” and correspond to the “normative” and “ideal” types of
expectations described above. Adequate expectations are defined as the minimal
acceptable outcome. The range between these two levels of expectation is called the
“zone of tolerance”. Researchers also distinguish expectations of outcomes from
expectations of process (Parasuraman, Zeithaml et al. 1991). Expectations are not
static but likely to change with accumulating experience (Locker and Dunt 1978). For
example, an adolescent with idiopathic scoliosis may articulate a desired expectation of
a perfectly symmetric back without visible scars following surgery, but may be willing to
accept a perfectly symmetric back with visible scars, as adequate. Such a narrow zone
22
of tolerance, with the expectation of perfect symmetry, maybe unrealistic. Based on
information provided by the surgeon or discussions with other patients who have
undergone surgery, the patient may lower her level of adequate expectations to
improved but not perfect symmetry, thereby expanding the zone of tolerance.
Thus, expectations have been variously used to represent an anticipation (looking
forward to something); a likelihood (the probability of a future event or occurrence); an
entitlement; a justification (reason or warrant for looking forward to something); or
something hoped or wished for (Kravitz 1996). Efforts have been made to standardize
the definitions of desires and expectations and to bring some clarity to our understanding
of these concepts (Uhlmann, Inui et al. 1984; Kravitz 1996). Based on a comprehensive
review of the bio-medical literature, Kravitz proposed that the following properties must
be considered while defining patient expectations (Kravitz 1996).
1. Definitional Orientation: Probabilities (expectancies) or Values
Expectations may be expressed as probabilities (expectancies), which refer to the
patient’s belief or perception about the likelihood of future clinical events or occurrences
(Uhlmann, Inui et al. 1984). The outcome may be desirable or not. For example,
patients undergoing instrumented spinal fusion surgery for idiopathic scoliosis may
perceive a high likelihood that their spinal deformity will be reduced following their
operation.
Alternatively, expectations can be expressed as values, which are attitudes reflecting a
patient’s valuation or perception that a given event is wanted (Uhlmann, Inui et al. 1984).
Value expectations can be expressions of desires (what is wanted or one’s ideal
expectations), necessity (what is perceived to be needed), entitlement (what is felt to
23
be owed), or normative standards (that which should be). Patient desires or wishes
can be explicitly communicated as requests (Uhlmann, Inui et al. 1984). They can also
be expressed in terms of importance. It is not known if inquiring about “importance’
results in different responses than asking about desires, needs or entitlements directly.
Events desired (wanted, wished or hoped for) may not be expected (perceived to be
likely) and vice versa. For example, patients undergoing instrumented spinal fusion for
idiopathic scoliosis may desire a completely normal looking back after their surgery but
may not expect such an outcome. In contrast, they may expect to experience pain in the
post-operative period and a scar, but not desire this.
Patient desires and expectations are products of concerns related to diagnostic,
prognostic and therapeutic issues. Patients can have biomedical concerns as well as
psychologic, social, administrative, and interactional concerns (Uhlmann, Inui et al.
1984; Kravitz 1996).
2. Level of Specificity: General or Specific Expectations
Patient expectations may be aimed at expectations for care in general, which include
factors such as continuity, comprehensiveness, availability, compassion, expertise,
coordination, cost, and convenience of care (Fletcher, O'Malley et al. 1983); or
expectations for specific aspects of care such as a specific medical encounter or
surgical procedure. Although general expectations have also been called goals,
priorities or role preferences in the literature, these terms apply just as well to
expectations for specific aspects of care including clinical outcomes.
24
3. Content of Expectations: Structures, Processes or Outcomes
Using the conceptual scheme for assessing health care quality developed by
Donabedian (Donabedian 1980), the content of expectations may focus on one or more
of these aspects. Health care structures refer to facilities, personnel (medical, nursing,
clerical, administrative), equipment, and organizational policies needed to provide good
health care. Processes of health care occur during the provision of care by physicians
and other health care providers, including judgments about technical processes (e.g.
history taking, physical examination, diagnostic testing, therapeutic procedures,
prescriptions, and referrals), and interpersonal processes (e.g. communications and
interactions between physicians and patients or between consulting physicians). Finally,
and probably most importantly, outcomes are the end results of care, including physical,
functional, psychosocial and financial outcomes, which can be measured in the short,
medium or long term.
Few studies of patients’ expectations have focused on structure possibly because of
the assumption that good structures produce good processes. Consequently, most
studies on patient expectations focus on processes of care. In a primary care clinic
setting, Good et al found that patient expectations (request categories) of the clinical
encounter most highly ranked were requests for test results, explanation, symptomatic
treatment, medical advice, and provision of a diagnosis (Good, Good et al. 1983). The
validated Patient Request for Services schedule (Like and Zyzanski 1986) categorizes
patient expectations (requests) in the following five dimensions: medical information;
psychosocial assistance; therapeutic listening; general health advice; and biomedical
treatment. When tested in a family practice setting, request fulfillment explained 19% of
variance in patient satisfaction (Like and Zyzanski 1987).
25
Despite evidence that suggests patients evaluate processes partly in terms of the
outcomes they produce (Kravitz, Cope et al. 1994), there has been relatively little
attention focused on expectations of outcomes, with some exceptions (Noyes, Levy et
al. 1974; Woolley, Kane et al. 1978; Davis, Albino et al. 1986; Uhlmann, Inui et al. 1988).
Kravitz speculates that “this may be because individual physicians have a great deal of
control over processes but little over outcomes” (Kravitz 1996). In the field of
orthopaedics, patient expectations in relation to outcomes have been explored primarily
in the total hip replacement literature (Burton, Wright et al. 1979; Haworth, Hopkins et al.
1981; Wright, Rudicel et al. 1994; Mancuso, Salvati et al. 1997), hip fractures
(Furstenberg 1986); knee replacement and knee surgery (Mancuso, Sculco et al. 2001);
shoulder surgery (Mancuso, Altchek et al. 2002); foot surgery (Bellacosa and Pollak
1993) and surgery for spinal stenosis (Iversen, Daltroy et al. 1998).
3.5 Expectations & Satisfaction: Theory of Expectancy Disconfirmation
Several theories have been proposed to explain the relationship between expectations
and patient satisfaction, mostly falling under the rubric of the Expectancy
Disconfirmation theory of Zegers. Under the disconfirmation paradigm, satisfaction is
the result of a comparison between prior expectations and perceived occurrences
(Zegers 1968). This theory assumes that individuals have preformed expectations, and
are able and willing to judge the quality of outcomes. According to this model,
satisfaction increases with the level of perceived performance or outcome, and the
magnitude of the individual’s prior expectations. If performance exceeds expectations
(i.e., there is positive disconfirmation), an increase in satisfaction is likely, whereas if
performance falls short of one’s expectations (i.e., if there is negative disconfirmation), a
decrease in satisfaction is likely (Yi 1990). Dissatisfaction is increased by a disparity
between a standard (expectancies, values, norms) and the perceived occurrences
26
(outcomes). The theory of expectancy disconfirmation has been a dominant theme in
the satisfaction literature of many fields.
In their studies on job satisfaction, social psychologists Fishbein and Ajzen describe
satisfaction or dissatisfaction as expressions of attitude, which reflect one’s evaluations
or affective responses towards the subject of interest (Fishbein and Ajzen 1975).
Expectations are beliefs, which are products of a cognitive process. The relation
between attitudes and beliefs can be explained by the Expectancy-Value theory, which
describes expectations as beliefs that a given response will be followed by some event,
which produces either a positive or negative valence or affective orientation to the event
or outcome (Fishbein and Ajzen 1975).
Lawler has reviewed the literature on satisfaction with pay, in which he identified and
categorized other theories of satisfaction based on how satisfaction was measured in
these studies (Lawler 1971). Discrepancy theory defines satisfaction as a result of the
difference between what is desired (or expected, or perceived to be needed) and what is
experienced (perceived to occur), as a proportion of those desires (expectations or
needs). This model takes into account the amount desired or expected in the first place.
Fulfillment theory, in contrast, defines satisfaction as the simple difference between
outcomes desired (expected or needed) and perceived occurrences. Finally, Equity
theory proposes that satisfaction is a result of perceived balance of inputs and outputs
evaluated in comparison to others’ balances. Satisfaction occurs when one perceives
one’s share of resources is fair in relation to what others receive, adjusted according to
agreed-on rules or norms.
27
In the social sciences, the Relative Deprivation theory posits that when one receives
less than what one wants one feels a sense of deprivation; when one receives less than
one expects one feels disappointment; and one receives less than what one is entitled to
(based on social rules and values), one feels a sense of injustice (Williams 1975).
In the marketing literature, there are several models of customer satisfaction that are
also based on the theory of expectancy disconfirmation. The Cognition-Affect Model is
a composite model of satisfaction (Oliver 1993) linking attribute performance (perceived
occurrences) and prior expectations indirectly with satisfaction through a process of
disconfirmation. In this pathway, positive evaluations are derived by comparing
perceived occurrences with a set of internal standards. The model also incorporates the
empirical observation that attribute performance and expectations affect evaluations of
satisfaction directly. Higher expectations (regardless of performance) and excellent
performance (regardless of expectations) lead to positive evaluations. The model also
takes into account the influence of affect domains (positive or negative attitudes) as an
intermediary between attribute performance (outcome) and satisfaction. Equity or
inequity is also a distinct contributor to satisfaction.
Anderson proposed the Assimilation-Contrast Model of Perceptions (Anderson 1973)
which provides a more empirically supported explanation for why when using the
disconfirmation paradigm, there is little variance in measures of satisfaction, except
under extreme circumstances. Based on Festinger’s Theory of Cognitive Dissonance
(Festinger 1957), an assimilation effect occurs when perceptions of performance differ
only slightly from expectations. This is because disconfirmed expectations tend to cause
psychological discomfort. Any discrepancy between expectation and performance will
be minimized or assimilated by the consumer adjusting the perceptions of the product to
28
be more consistent with expectations. Perceived satisfaction can be high despite
disconfirmed expectations. However, when there is a large discrepancy between
perceived performance and prior expectations, there is a tendency to exaggerate the
difference, called a contrast effect.
The Zone of Tolerance Model incorporates a range between “adequate” and “desired”
levels of service expectations called the “zone of tolerance” (Parasuraman, Zeithaml et
al. 1991). The zone expands or contracts and falls or rises depending on the individual
and the context. Zone of tolerance is higher and narrower for more important
dimensions of expectations. Adequate expectation levels are more apt to change than
desired level, and are influenced by specific circumstances. Desired level may also
change based on past experience or based on new information.
In the context of health care, Thompson and Sunol proposed a composite model of
patient satisfaction that combines Anderson’s Assimilation-contrast model and
Parasuraman’s Zone of tolerance model from marketing research to be used for any
future empirical study of the disconfirmation paradigm (Thompson and Sunol 1995).
This model substitutes Anderson’s “objective” performance with subjective perceived
performance (outcome) because expectations and satisfaction are more likely to relate
to these subjective criteria rather than any objective measures per se. Models need to
account for contribution of affective states, which may be possibly of greater importance
than some cognitive evaluations in what could be a highly emotional or extraordinary
experience. Disconfirmed expectancies can lead to non-linear patterns of satisfaction.
Expectations can also be distinguished into expectations of structure, process and
outcome components (Thompson and Sunol 1995).
29
Linder-Pelz formulated five separate hypotheses, derived from the original Fishbein &
Ajzen theory, the Discrepancy theory, and Fulfillment theory and its variants, and tested
these to determine how expectancy (perception) value interactions influence patient
satisfaction (Linder-Pelz 1982; Linder-Pelz 1982). This study was conducted in the
setting of out-patient primary care clinic studying first time patients and their experience
with their medical encounter. Prior expectations, values and perceived occurrences had
independent effects on patient satisfaction with the clinic visit, but together these
accounted for less than 10% of the variation in patient satisfaction. Prior expectations,
independent of other variables, consistently had the most significant effect on
satisfaction (2 of 3 satisfaction scales), but explained no more than 8% of the variance in
satisfaction ratings. This work would suggest that patients’ background beliefs (prior
expectations) play a more significant role in determining their satisfaction with care than
their perceptions of the care received. There was no support for Fishbein & Ajzen’s
theory, as the interaction of values and expectations was unrelated to satisfaction.
There was no support for Fulfillment model either. There was some support for the
Discrepancy model. Linder-Pelz found that satisfaction was inversely related with
discrepancy: the better the perceived occurrence in relation to prior expectation, the
more the satisfaction. Satisfaction was greater among patients with both favourable
expectations and favourable occurrences than among patients with favourable
expectations but negative occurrences, and least among those with both negative
expectations and negative occurrences (Linder-Pelz 1982).
Linder-Pelz considered only three dimensions of care (doctor conduct, general
satisfaction, and convenience), which pertain more to process than outcomes. The
measures of expectations and values were often single-item measures, which did not
always match in content with satisfaction item used as counterparts. Nevertheless, this
30
work highlights the importance of patients’ prior expectations in determining their
satisfaction with care, and therefore, prior expectations should be taken into
consideration in any exploration of patient satisfaction (Linder-Pelz 1982).
3.6 Issues in Measuring Patient Priorities
No ideal method for measuring patient priorities has been established. Researchers
have used a variety of qualitative and quantitative techniques to measure expectations
and their relationship with satisfaction (Ross, Frommelt et al. 1987). Scholars have
recommended the need for qualitative studies to explore how patients conceptualize and
articulate their concerns, desires and expectations as a necessary precursor of
quantitative studies (Thompson and Sunol 1995). Patients’ perspectives should be used
to develop questionnaires specifically to measure expectations in healthcare, because
patients can best articulate what they should be asked based on what is salient from
their experiences rather than leaving this up to the researcher (Aharony and Strasser
1993).
Kravitz describes what factors to consider when patient expectations are measured
(Kravitz 1996). He also emphasizes the importance of the timing of the assessment of
expectations. Typically, an expectation is formed prior to an encounter (or intervention).
Expectations may be modified during the encounter, and referenced after the encounter
for the purpose of making an overall judgment about the encounter and therefore
satisfaction. Expectations can therefore be examined either before and/or after the
intervention. How much before or after the encounter is also important. Although pre-
treatment expectations are independent of, and uncontaminated by, subsequent events,
they may be less relevant than expectations that are formed (or persist) during or after
the intervention (Kravitz 1996). Brody has shown poor to modest correlations between
31
pre- and post visit desires of patients visiting a hospital outpatient clinic (Brody, Miller et
al. 1989). It is unclear whether this discordance can be attributed to a true change in
expectations or a change in the patients’ reporting of their expectations. Longitudinal
studies are necessary to establish how patient priorities emerge and are modified during
the process of care (Thompson and Sunol 1995).
Kravitz recommends that the scope of the measurement must also be considered when
formulating a survey about expectations (Kravitz 1996). This is reflected in the breadth
of questions asked. Questions or items in a survey can pertain to broad categories of
care, or correspond to specific interventions. The latter may result in a long list of items
and a larger respondent burden. However, specific items are more likely to demonstrate
a link between expectation fulfillment and satisfaction (Kravitz, Cope et al. 1994). The
questions can be closed or open-ended (Uhlmann, Inui et al. 1988).
Ideally the use of mixed methods to measure the same phenomenon such as the
concurrent use of self administered surveys, personal interviews, surveys or interviews
of family members, participant observation, etc. will help triangulate the measurement
(Arnould and Price 1993). In the context of paediatric medical care, most studies of
satisfaction are based on parents’ perception of their own experience or their perception
of their child’s experience rather than the child’s perceptions of care. It is important to
recognize these as proxy responses and to measure the children’s perception whenever
possible (Aharony and Strasser 1993). The relationship between expectations and
satisfaction should be explored in a variety of health care contexts as findings derived in
one clinical setting are not necessarily generalizable to other clinical settings. The
relationship of satisfaction with actual and perceived patient outcomes also deserves
further study (Aharony and Strasser 1993).
32
Patient expectations may also be influenced by personality, previous experience, social
and cultural values, and the particular context in which care is received (Cleary and
McNeil 1988). Kravitz recognized the lack of a conceptual model linking patients’
expectations to their cultural and social-psychological antecedents, and to their
cognitive, affective, and behavioral consequences. He proposed a framework modeled
around patient satisfaction in order to promote improved clinical care and research
incorporating these concepts (Kravitz 1996). In this model a patient has initial
expectations which are formed prior to an encounter or intervention, but may be
modifiable as the encounter proceeds. These initial expectations may be well formed or
amorphous, and factors such as sociodemographic characteristics, prior experiences, or
specific biopsychosocial concerns may be important determinants of these expectations.
During the medical encounter or intervention the patient perceives the outcome. The
perception of the encounter may be based on the actual occurrences filtered through the
patient’s neurosensory and psychological apparatus. The patient’s evaluation of the
outcome begins during and after the encounter and involves a comparative process
where perceived occurrences are contrasted with expectancies (beliefs about the
probability of an occurrence) and to values (attitudes toward potential occurrences).
This evaluation may also be affected by age, ethnicity, and health status and gender
(Hall, Irish et al. 1994).
3.7 New Conceptual Framework
Using the literature linking patient expectations with satisfaction, the model proposed by
Kravitz was adapted to construct a new conceptual framework, which could be applied to
the context of adolescents undergoing surgery for idiopathic scoliosis (Figure 1). In this
model the patient’s priorities (concerns, desires and expectations) are linked to one’s
33
experience of living with the condition (symptoms); to one’s beliefs about the natural
history of the condition (diagnosis and prognosis); as well as beliefs about the treatment
and its consequences (actual and perceived outcomes). In content, this model is
focused on the outcomes of health care and not with structures or processes of health
care (Donabedian 1988).
There is some empiric evidence that the main content of patient expectations are
derived from ideas about the presenting illness and the concerns that arise about these
(Fitzpatrick and Hopkins 1983). The typical presentation of adolescent onset idiopathic
scoliosis is seldom associated with any symptoms. The presenting “complaint” is usually
an observed asymmetry of the back that is either picked up by a family member or
friend, or by a screening examination done by a family doctor or at school. The
subsequent referral to a specialist will establish the diagnosis of scoliosis based on the
physical examination and radiographs. This medical encounter will typically involve
some discussion about the diagnosis and its natural history or prognosis, which also
contributes to the patient’s accumulation of concerns and expectations over and above
those from ideas about the current illness (Fitzpatrick and Hopkins 1983). There follows
a discussion of treatment options and recommendations prior to some decision being
made. These steps may occur over several encounters or periodic outpatient visits.
At the outset the patient may develop a set of concerns initially in response to
perception of the presenting illness. These concerns may not be well formed until after
the diagnosis has been established and some discussion about the implications of
idiopathic scoliosis has occurred with the specialist. Concerns are the product of the
patient’s personal beliefs (cognitive component) as well as emotional orientation
(affective component) (Fitzpatrick and Hopkins 1983). Concerns can be influenced by
34
personal experience and information gleaned from a variety of sources besides the
patient’s doctor, such as books and magazines, and the internet; or knowledge of others
experiences. These sources may provide variable and conflicting information, all of
which can shape the patient’s perception of the natural history or prognosis. In a study
of patients presenting with headaches to a neurology out-patient clinic, Fitzpatrick and
Hopkins have shown patients to demonstrate three types of concerns: concern for
reassurance; concern for relief of symptoms; concern for preventative intervention
(Fitzpatrick and Hopkins 1983). These types of concerns may generically apply to
adolescents with idiopathic scoliosis as well. The actual concerns may be about
problems experienced in the present or potential future problems that are believed to be
potential future consequences scoliosis. There are separate set of concerns related to
the treatment (bracing or surgery) of scoliosis and its potential side effects or
complications.
These biopsychosocial concerns, some of which might be unfounded, are likely to be
major motivating influence in the formulation of the patient’s initial desires and
expectations. In this model, patient desires are expectations as values (Kravitz 1996),
which reflect a patient’s perception that a given event is wanted. These can be
expressed as what the patient wants (or wishes) from treatment of their scoliosis, or
what the patient feels she needs to address her concerns about the consequences of
scoliosis. These desires are akin to the ideal expectations (Friedson 1961) or desired
expectations of the zone of tolerance model (Parasuraman, Zeithaml et al. 1991).
Patient’s may (or may not) be aware that these desires are unrealistic and be able to
express their expectations as probabilities or the likelihood that a given event will occur
following treatment (Kravitz 1996). These expectations are consistent with the predicted
35
or anticipated outcomes (Friedson 1961). If expressed as the minimal acceptable
expectation, this would be consistent with the adequate outcomes of the “zone of
tolerance” model (Parasuraman, Zeithaml et al. 1991). These expectations of treatment
can apply to desired as well as undesirable events or outcomes.
Like patients’ concerns, patients’ desires and expectations are also likely to evolve over
time. Indeed in idiopathic scoliosis, the spinal deformity is usually treated only if the
deformity is quite large or has been shown to be progressive. When the deformity
reaches some threshold, treatment is recommended based on the treating doctor’s
perception of the natural history of that deformity. During the process of informed
consent, the objectives of the treatment are described, and alternative strategies to
accomplish these objectives discussed along with the potential risks and complications.
In this era of shared decision making, this process must take the patient’s priorities into
consideration, so that the objectives of the treatment chosen may be consistent with the
desires and expectations of the patient. When these are divergent an alternative
treatment option (if it exists) may be offered. Therefore, patients’ expectations may
modify what a physician does via requests, which are expressions of patients’ wishes.
When these are unrealistic or poorly formed, the doctor’s responsibility is to educate the
patient so that she has the opportunity to “recalibrate” her priorities. Therefore, the
doctor-patient negotiation during a clinic visit can also influence patients’ concerns,
desires and expectations. Ideally, treatment should only occur when there is a
convergence of patient priorities and treatment objectives.
The effects of treatment are called the outcomes. Some of these are easily measurable
and others less so. The outcome experienced by the patient is the perceived outcome,
which is influenced by the actual outcome, but also coloured by the positive or negative
36
disconfirmation of the patient’s expectations. Actual occurrences can influence
expectations, either directly or by altering patients’ perceptions (Kravitz 1996). The
evaluation of the perceived outcome can be expressed as satisfaction. The magnitude
of satisfaction is determined by many factors including the actual outcome contributing to
satisfaction directly or indirectly through the patient’s perceived outcome. The perceived
outcome is compared with patient’s prior concerns, desires and expectations.
Presumably, the magnitude of patient satisfaction is also determined by whether the
patient got what she wanted and or expected, avoided undesirable events, and had her
concerns alleviated. This is consistent with the rationale for the intervention in the first
place, which is to alter favorably some or all aspects of the natural history of that
condition, doing the least harm possible.
This model assumes that patients (adolescents) do indeed have concerns, desires and
expectations, and are able to articulate them. However not all patients may have well
formed priorities. Even if they do, they may not be willing to share some or all of their
concerns, desires and expectations. Although the patients are old enough to articulate
their priorities, decisions regarding treatment are not made independently of their
parents. The parents’ concerns, desires and expectations must also be considered, and
these may be quite distinct from those of their child.
37
Figure 3.1 NEW CONCEPTUAL FRAMEWORK
The model is time ordered with past events represented at the top. The left half of the model, shaded in red, represents the patient’s perspectives including the patient’s priorities, perceived outcomes and satisfaction.
PRESENTATION Symptoms Experience
Observed deformity
DIAGNOSIS
NATURAL HISTORY or PROGNOSIS
CONCERNS • Present • Future • Treatment related TREATMENT OPTIONS
• Observation • Orthosis (brace) • Operation
DESIRES • Wishes • Needs
EXPECTATIONS • Desirable • Undesirable
TREATMENT
OUTCOMES • Reduced deformity • Reduced future risks
PERCEIVED OUTCOMES
PATIENT SATISFACTION WITH OUTCOME
N E G O T I A T I O N
REFERRAL
38
3.8 Summary
With the recognition that patient satisfaction is one of the key indicators of the quality of
care received, there is an increasing emphasis on understanding the antecedents of
satisfaction, of which patient expectations are believed to be the dominant factors.
Patient expectations primarily reflect an expectancy or perception that a given event is
likely to occur, whereas patient desires are wishes regarding medical care and primarily
reflect a value or perception that a given event is wanted (Uhlmann, Inui et al. 1984;
Kravitz 1996). Patient desires and expectations are products of biopsychosocial
concerns related to diagnostic, prognostic and therapeutic issues (Uhlmann, Inui et al.
1984; Kravitz 1996). Collectively, patient concerns, desires and expectations can be
called patient priorities. An understanding of the patient’s priorities is important for
many reasons, including making clinical decisions in medical conditions in which
preferences play a role. The alleviation of patient’s concerns, fulfilling their wishes and
meeting their expectations remain fundamental goals in the practice of medicine.
In the health care context, patient priorities can focus on general or specific aspects of
the structures, processes or outcomes of medical care. Patient priorities are products of
a dynamic interaction, emerging, evolving and even changing over time in response to
accumulating experience (Locker and Dunt 1978; Thompson and Sunol 1995). Patient
desires and expectations are presumed to interact with perceived occurrences to
produce evaluations of care, which may be expressed as some measure of satisfaction.
This interaction is believed to occur implicitly through some process of expectancy
(dis)confirmation, where disconfirmation is the extent to which expectations are not met.
Numerous theories have been proposed to explain this complex relationship in the areas
of job satisfaction, marketing, psychology, sociology and heath care. In general,
39
expectations have been shown to account for only a small amount of variance in patient
reports of satisfaction. However, there has been little consistency in the way patient
expectations have been studied or in their correlations with expectations. Expectation
categories derived in one clinical setting are not necessarily generalizable to other
clinical settings.
The model proposed by Kravitz was adapted to develop a new conceptual framework
that incorporates the empirically supported findings (or hypothesized relationships) of the
many theories pertaining to the formulation of patient satisfaction. This framework
served as the foundation for the conduct of this research.
40
CHAPTER 4
Measurement of Concerns, Desires and Expectations
4.1 Introduction
The research project was conducted in three stages. The first phase involved the review
and synthesis of the literature followed by the development of an instrument to measure
patient priorities pertaining to surgery for idiopathic scoliosis. The second stage involved
the recruitment of patients and parents for the completion of the surveys and subsequent
structured interviews. In the third stage, patients’ surgeons were surveyed followed by a
national survey of all surgeons involved in the management of adolescent spine
deformity in Canada.
This chapter describes the development of the questionnaires that were used to
measure the concerns, desires and expectations of adolescents undergoing surgery for
correction of their idiopathic scoliosis. A qualitative approach was used to construct
patient, parent and surgeon version of the questionnaire. The questionnaires were pilot
tested prior to their use separately for patients, their parents and their surgeons.
4.2 Development of Questionnaire
Development of the questionnaire was informed by the review of the literature, described
in Chapter 2, about priorities pertinent to adolescent onset idiopathic scoliosis. The
literature on patient priorities, including the concepts of concerns, desires, expectations
and patient satisfaction, was reviewed and reported in Chapter 3. Various theoretical
perspectives and conceptual models were examined to assess their applicability to
adolescent idiopathic scoliosis. Recommendations based on empirical evidence were
sought to support an appropriate framework to measure these concepts (Linder-Pelz
1982; Uhlmann, Inui et al. 1984; Thompson and Sunol 1995; Kravitz 1996). Conceptual
41
definitions were derived from the new framework. The questionnaire was developed
specifically to measure patients’ concerns about current and future problems of scoliosis,
concerns about the surgical treatment, their desires or wishes of treatment, and their
expectations of desired and undesirable outcomes of treatment.
Following the recommendations of Uhlmann (Uhlmann, Inui et al. 1984), the
questionnaire was developed qualitatively using an adaptation of the negotiated
approach to patienthood (Lazare and Eisenthal 1979). Previously called the
“customer approach to patienthood”, this method involves a semistructured patient
interview primarily for the elicitation of patient requests (Lazare, Eisenthal et al. 1975).
Designed to complement the traditional biomedical approach to making a diagnosis and
providing treatment, this approach employs an interview based on the standard history
of present illness interview, but specifically asks patients to identify problems for which
they seek care, identify desired outcomes and desired methods to achieve those
outcomes (Eisenthal, Emery et al. 1979).
Ethical approval was obtained from the Research Ethics Board at The Hospital for Sick
Children, to conduct patient and parent interviews for the purpose of item generation.
Eligible participants were drawn from a purposeful sample of patients with adolescent
onset idiopathic scoliosis who were candidates for, and had been offered/recommended,
surgery for their scoliosis, as well as the parents of these patients. Following their
diagnosis, these patients had undergone a period of observation or brace treatment up
until the time of the interview. This ranged from 6 months to 3 years. Since the
diagnosis was not new, it was felt that the patient’s current knowledge/understanding of
the diagnosis and its implications would have evolved to the point that she/he was likely
to have developed a set of concerns, desires and expectations pertaining to the
condition and proposed treatment. The purpose of these initial interviews was to
42
encourage patients and their parents to articulate these issues, so that they could be
further explored and documented. Written consent was obtained from patients and their
parents to participate in the interviews.
Initial interviews were open-ended discussions with patients (and their parents) that
focused on all their concerns, worries, wishes, hopes, needs, desires, and expectations
pertinent to their diagnosis of idiopathic scoliosis and its treatment. Interviews were
audio-tape recorded. Each interview was transcribed and immediately analyzed.
Common themes were sought and specific items identified. Additional items were
derived by surveying a group of paediatric orthopaedic surgeons, experienced in the
management of idiopathic scoliosis. Items were separated into sections for concerns
about the diagnosis; concerns about the treatment; desires, wishes and perceived goals
of the treatment; expectations of treatment in terms of probabilities or likelihood of
events (outcomes) good and bad following surgery, and the minimal acceptable outcome
that would satisfy the patient (or parent). In each of these sections, items were
organized according to whether these were current and/or future priorities, and
according to different domains, such as physical appearance, pain, physical function,
social function, issues of self esteem and emotion, and issues of health. Additional
patients and their parent/s were interviewed until saturation was achieved. Saturation
was assumed when no additional items emerged following three consecutive interviews.
After the initial open-ended interviews, subsequent interviews were semi-structured with
a pre-defined set of open-ended questions as well as a list of questions/items with
scaled response options. A questionnaire was developed with ordinal rating scales for
each of the items. This was an iterative process with the questionnaire being modified in
response to feedback from the interviewees to ensure simplicity and comprehension.
43
Each successive interview was used to revise the questionnaire. A total of eight sets of
patients and their parents were interviewed to develop the final draft of the
questionnaire. The questionnaire was examined by the paediatric orthopaedic surgeons
for face and content validity. The final questionnaire was pilot tested on 11 additional
patients (and their parents), either prior to their scheduled surgery or after they had
already undergone surgery. All interviews were conducted by the principal investigator.
4.3 The Patient Questionnaire (Appendix A)
The final questionnaire included eight sections.
4.3.1 Section I
Section I was entitled “Patient’s concerns regarding scoliosis”. The purpose of this
section was to determine what concerns or worries each patient had with regards to
her/his diagnosis of adolescent idiopathic scoliosis (the illness). This section included 21
items encompassing 5 different domains (number of items): physical appearance (3),
pain (2), physical function (4), psychosocial: social function, emotion/self esteem (8), and
health (4). In addition, the respondent could add up to two additional items to the
provided list. Eight of the 21 items could be categorized as concerns pertaining to the
patient’s “present” experience (at the time), while the remaining 13 items pertained to
potential “future” problems. For example the two items on concerns about physical
appearance are focused on “physical appearance at the time” or “physical appearance in
the future” respectively. The patient was asked to rate the magnitude of concern that the
patient experienced with regards to each of the listed items using a 6-point ordinal rating
scale ranging from “Not at all concerned” (0) to “Extremely concerned” (5). Since this
survey was designed for patients who had completed their surgery, we were interested
in determining the patients’ concerns prior to surgery. Section IA refers to the patient’s
previous concerns, which are the patient’s concerns about scoliosis experienced
44
before surgery. Since this evaluation required recalling experiences from 2 years
previously, patients had the option of choosing “Don’t remember”, which was treated as
0 for the analysis. Section IB refers to the patient’s present concerns, which captures
the patient’s current or residual concerns about their diagnosis two years after her/his
surgery.
4.3.2 Section II
Section II attempts to quantify each patient’s experience of living with scoliosis, akin to
the presenting complaints or symptoms one might associate with one’s condition
(Section II; Appendix 3). This section only includes the eight (out of 21) items that
pertain to experiences at the time and not to potential experiences of the future. The
respondent could include up to two additional items to the list. The item on physical
appearance was expanded to include seven specific aspects of the physical appearance
that patients reported were of importance to them during the initial interviews. For each
of the items listed, the patient was asked to rate the perceived magnitude of the problem
due to scoliosis that the patient experienced using a 6-point ordinal rating scale ranging
from “Not a problem” (0) to “Very severe” (5). Section IIA refers to the patient’s
previous problems, which are the problems they experienced before surgery. Since
this evaluation required recall, patients had the option of choosing “Don’t remember”,
which was treated as 0 for the analysis. Section IIB refers to the patient’s present
problems, which quantifies the patient’s current or residual problems two years after
her/his surgery. These correspond to patients’ perceived outcomes in these domains.
4.3.3 Section III
Section III captures each patient’s perception of the likelihood of future problems as a
result of her/his scoliosis. This section includes the thirteen items (out of 21) that pertain
45
to potential future issues that some patients believe might be problematic. Respondents
could include up to two additional items of their choice. In Section IIIA, patients were
asked to recall what they thought the likelihood of each of the items was before their
surgery. These items were rated on an 8-point ordinal rating scale ranging from
“Extremely unlikely” (1) to “Extremely likely’ (7). The item was rated 0, if the patient
believed this was “Not a problem” or reported “Don’t know”. This section assesses
patients’ perception of the natural history of their condition. In Section IIIB, patients were
asked to rate their current perception of the future likelihood of the same thirteen items
as a result of their surgery. The purpose of this section was to capture patients’
perception of whether the natural history of their scoliosis had been altered by their
surgery, and also captures patients’ perceived outcomes pertaining to the preventative
aspects of the operation.
4.3.4 Section IV
Section IV of the questionnaire measures what each patient wants from treatment or
their reasons for having surgery. These correspond to patients’ ideal expectations or
their preferred outcomes (Friedson 1961). These value expectations are attitudes
reflecting a patient’s perception that a given event is wanted (Uhlmann, Inui et al. 1984;
Kravitz 1996), and are expressed as wishes or hopes regarding medical care. For this
study, patient desires were operationalized in two ways. First, in Section IVA, the patient
was asked to report how much one hoped, wished or desired that the treatment
(surgery) would accomplish each of 21 different objectives or goals (plus 2 additional
objectives of her/his choice). The strength of this desire was rated on a 6-point ordinal
rating scale from “Not at all desired” (0) to “Very strongly desired” (5). Once again, since
the questionnaire was relying on patient recall of desires prior to having surgery, the
patient was given the option of an additional response “Don’t remember”, which was
46
treated as 0 for the analyses. Secondly, in Section IVB respondents were asked to rank
their wishes or desires in order of “most to least important reason” for undergoing
surgery, from the list of 21 objectives. Respondents were asked to limit their ranking to
their top 10 wishes.
4.3.5 Section V
Section V of the questionnaire measures patient expectations of surgery for scoliosis.
This study focuses on specific rather than generic expectations, and is limited to
expectations for outcomes rather than with processes or structures of medical care
(Kravitz 1996). In this study the measurement of patient expectations were
operationalized in two ways. First, in Section VA, expectations are defined as the
subjective estimation of the likelihood that a given event or outcome will occur. These
predictive expectations are therefore expressed as an expectancy or probability
rather than a value, and represent a belief strength (Uhlmann, Inui et al. 1984;
Thompson and Sunol 1995; Kravitz 1996). Patients were asked to report their
estimation of the likelihood that surgery would accomplish each of the listed 21 goals.
The likelihood of such an event occurring was rated on an 8-point ordinal rating scale
ranging from “Never: 0%” (0) to “Extremely likely: >95%” (7). Secondly, in Section VB
patients were asked to report the minimum acceptable outcome for each of the 21 goals
listed, that would be necessary for the patient to be satisfied, using an ordinal rating
scale ranging from “No change” (0) to “Very large (improvement or reduction of future
risk)” (5). This corresponds to the concept of adequate expectations (Parasuraman,
Zeithaml et al. 1991), and is being expressed here as a value expectation (Uhlmann,
Inui et al. 1984; Kravitz 1996).
47
4.3.6 Section VI
The outcomes of treatment can include events that are desirable (goals of the
intervention) as well as those that are undesirable (side effects and adverse events of
the intervention). The latter are dealt with in Section VI. In Section VIA, patients’
concerns are explored further but are focused on their concerns regarding the
surgical treatment of scoliosis rather than the diagnosis itself. Based on the initial
interviews, 24 different concerns were raised, which included some of the inevitable
unpleasant post-operative experiences as well as potential side effects, risks and
complications. Eleven of these issues could be categorized as short term problems,
while the remaining thirteen items had implications for the long term, arbitrarily defined
as one year after surgery to the rest of one’s life. The magnitude of concern for each of
these items was rated on a 6-point ordinal rating scale ranging from “Not at all
concerned” (0) to “Extremely concerned” (5). Respondents also had a “Don’t remember”
option that was scored 0 for the analyses. The level of concern regarding an adverse
event does not necessarily correlate with the perceived likelihood of the event. For
example some patients may be somewhat concerned about post-operative pain because
they may perceive that post-operative pain is extremely likely. However, they may be
extremely concerned about the risk of paralysis, even though they perceive this risk to
be extremely unlikely. Section VIB measured the respondent’s expectations of
undesirable outcomes. Patients were asked to provide their estimation of the
likelihood of these undesirable events on an 8-point ordinal scale ranging from
“Extremely unlikely: <1%” (1) to “Extremely likely: >95%” (7). Ratings of “Not a concern”
or “Don’t remember” are scored 0 for the analyses.
It is important to note that patients were being asked to recall their pre-operative or prior
concerns, desires and expectations at a point in time long after (2 years) the intervention
48
had occurred. Hindsight expectations are consistently biased in the direction of
perceived occurrence or outcome (Christensen-Szalanski and Willham 1991).
Nonetheless, it has also been shown that hindsight, rather than foresight expectations
(i.e., expectations formed prior to surgery) are the more potent determinant of
satisfaction since at the time of assessing satisfaction, the unbiased foresight
expectations are no longer available to the patient (Zwick, Pieters et al. 1995).
4.3.7 Section VII
Section VII measures the perceived outcomes from the respondent’s perspective. In
Section VIIA, patients were asked to report the magnitude of change experienced for
each of the 21 objectives, following surgery. For the eight items dealing with problems
or experiences at the time of surgery, patients were asked to rate magnitude of change
experienced on a 7-point ordinal rating scale ranging from “much worse” (-3) to “much
better” (+3), anchored around the middle of the scale at “no change” (0). For the thirteen
items dealing with potential future problems or risks, patients were asked to rate the
perceived change in the likelihood of risk for each of the items following surgery. The 7-
point ordinal scale was anchored by “increased risk severely” (-3) to “reduced risk
completely” (+3) with “no change in risk” (0) in the middle.
In order to create a more sensitive and comprehensive measure of satisfaction, Locker
and Dunt recommended measuring satisfaction with specific aspects of patient’s care
following prior identification of the patient’s priorities (Locker and Dunt 1978). In Section
VIIB, patients were asked to report their level of satisfaction with the results
associated specifically with each of the 21 items, using a 7-point ordinal scale ranging
49
from “extremely dissatisfied” (-3) to “extremely satisfied” (+3), around the midpoint of
“neither dissatisfied nor satisfied” (0).
Each of the Sections I to VII was specifically aimed at measuring the corresponding
elements of the framework in Chapter 3: the patient’s problems; perception of the natural
history, concerns, desires, expectations, perceived outcomes and satisfaction. (See
Figure 2)
4.3.8 Section VIII
Finally, Section VIII was an open-ended section that allowed respondents to report any
surprises following surgery. The purpose of this section was to document unexpected
events (good or bad) experienced by patients (Nelson and Larson 1993), including those
that may not have been captured by the questionnaire. This was an opportunity for the
respondent to elaborate on such experience/s.
50
Figure 4.1 Linking the Questionnaire to the Conceptual Framework
Each section of the questionnaire is specifically aimed at measuring the corresponding elements of the model representing the patient’s concerns, desires, expectations, perceived outcomes and satisfaction.
PRESENTATION Symptoms Experience
Observed deformity
DIAGNOSIS
NATURAL HISTORY or PROGNOSIS
CONCERNS • Present • Future • Treatment related TREATMENT OPTIONS
• Observation • Orthosis (brace) • Operation
DESIRES • Wishes • Needs
EXPECTATIONS • Desirable • Undesirable TREATMENT
OUTCOMES • Reduced deformity • Reduced future risks
PERCEIVED OUTCOMES
PATIENT SATISFACTION WITH OUTCOME
N E G O T I A T I O N
REFERRAL
Section IIIA
Section VA & B
Section VIB
Section VIIB
Sections IB; IIB; IIIB; VIIA
Section IIA
Section IA
Section VIA
Section IVA & B
RadiographsPhotographs
51
4.4 Parental Questionnaire (Appendix B)
The Parental Questionnaire comprised the identical questions featured in the Patient
Questionnaire except for the following differences. Parents were asked to report their
concerns about their child’s scoliosis, their perception of the problems experienced
by their child due to scoliosis, their perception of the likelihood of future problems
that their child might experience due to scoliosis in Sections I, II and III respectively. In
Section IV, parents were asked about what they wished or desired for their child from
the surgical treatment for scoliosis, and to rank their wishes in the order of most to
least important. In Section V, parents were asked to report their perception of the
likelihood that surgery for their child would accomplish each of the objectives listed as
well as the minimal change that they would accept for them to be satisfied with the
results of the surgery for their child. In Section VI, parents were asked to report their
level of concerns they had for each of the short and long term undesirable events and
adverse outcomes related to their child’s surgery, as well as their perception of the
likelihood of each of these events. In Section VII, parents were asked to rate their
perception of what the surgery had actually accomplished for each of the listed
items, as well as their level of satisfaction with results or changes pertaining to each
of these items. Finally, in Section VIII, parents were also asked to report any pleasant or
unpleasant surprises or unexpected events that they or their child might have
experienced following their child’s surgery. These responses collectively capture the
parents’ priorities.
While the parents’ priorities might be different from those of their child, we were also
interested in determining whether parents thought that their child might have different
priorities from them, and if so how well they were able to predict what their child’s
52
priorities were. Therefore for each of Sections I, II, III, IV and VIA, parents were also
asked to report how they felt their child would have responded for each of the items
in those sections, in addition to their own responses.
4.5 Surgeon Questionnaire (Appendix C)
The Surgeon Questionnaire was designed to facilitate valid comparisons between
surgeons’, patients’ and parents’ perspectives on the priorities of treatment of idiopathic
scoliosis. In the surgeon survey, the respondent was asked to consider a typical patient
with adolescent idiopathic scoliosis who met that surgeon’s criteria for surgery.
4.5.1 Section I
For this typical patient, the surgeon was asked in Section I to provide an estimation of
the likelihood (probability) that patient’s scoliosis might be associated with each of the 21
problems, if left untreated. These were the same 21 items featured in the patient and
parental questionnaires, which had been identified as issues relevant to patients,
parents, and/or surgeons during the developmental phase of the questionnaires.
Section I therefore measures the surgeon’s perception of the natural history of
adolescent onset idiopathic scoliosis when it has already reached the stage where
surgery might be offered. Section I of the Surgeon Questionnaire corresponds to the
Sections II and III in the Patient and Parental Questionnaires.
4.5.2 Section II
In Section II, the surgeon respondent was asked to report how often each of these 21
items was a goal of surgery.
4.5.3 Section III
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In Section III, the surgeon was asked to rank the goals of surgery in order of most to
least important. This corresponds to Section IVA of the Patient and Parental
Questionnaires, where respondents were asked to rank their reasons for surgery in
order of most to least important.
4.5.4 Section IV
Section IV of the Surgeon Questionnaire measures the surgeon’s expectations of
surgery or perceived likelihood (probability) that surgery would satisfactorily accomplish
each of the 21 goals listed. This corresponds to Section VA in the Patient and Parental
Questionnaires.
4.5.5 Section V
Section V measures the surgeon’s expectations of undesirable (adverse) events
following surgery of idiopathic scoliosis. In this section the surgeon was asked to report
his/her perception of the likelihood (probability) of each of the short term and long term
risks or adverse events following surgery for a typical patient with adolescent idiopathic
scoliosis. This section corresponds to Section VIB in the Patient and Parental
Questionnaires.
4.5.6 Section VI
It is unlikely that surgeons would be, nor would they necessarily be expected to be,
“concerned” about scoliosis in the way patients and their parents would be. However,
their knowledge and experience with this condition presumably provides them with
insight that they would be expected to share with patients and parents in order to either
alert them to potential consequences or to reassure them about other issues that they
believe are not likely to be associated with scoliosis or its treatment. Despite one’s
54
compassion or caring for patients, there is likely to be an element of detachment that
attenuates one’s concerns considerably when it is not your own child that is the subject
of concern. Nonetheless, it would be interesting to determine what these concerns
might be if indeed the surgeon respondent was the parent of an adolescent child facing
surgery for idiopathic scoliosis. In order to measure surgeons’ “concerns” regarding
scoliosis, Section VI asks the surgeon respondent to imagine that it was the surgeon’s
daughter (and son) who had the idiopathic scoliosis and was a candidate for surgery.
Under these circumstances, given their knowledge and experience, how concerned
would the surgeon be (as a parent) for each of the 21 issues listed. The surgeon was
asked to report two sets of responses, one for a hypothetical daughter and one for a son
respectively.
4.6 Summary
The Patient, Parent and Surgeon Questionnaires were developed by directly involving
the most important stakeholders during the process. The items in the questionnaires
reflect the issues that are believed to be relevant to patients and their parents,
regardless of whether these issues are believed by surgeons to be related to the
diagnosis, prognosis, treatment or outcomes of idiopathic scoliosis. Face and content
validity was established by patients and parents during the process of developing the
questionnaire, as well as by paediatric orthopaedic surgeons involved in the care of
these patients. This is important, because content validated questionnaires are believed
to have the highest sensitivity for identifying patient requests, followed by semi-
structured and unstructured interviews(Uhlmann, Inui et al. 1984).
The questionnaire was structured based on a framework created in order to permit
empiric analyses of the relationship between patient priorities, perceived and actual
55
outcomes, as well as measures of satisfaction with specific outcomes. Although the
scope of this thesis was limited to the description and comparison of patient, parent and
surgeon priorities, the design and content of the questionnaires will permit deeper
explorations of the complex interaction between these concepts and the formulation of
patient satisfaction.
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CHAPTER 5
A Study to Compare Patients’, Parents’ and Surgeons’ Priorities
5.1 Introduction
This chapter describes the methods that were employed in the study of priorities of
adolescents with idiopathic scoliosis in order to contrast their priorities from those of their
parents, and surgeons who treat scoliosis. In this second stage of the research project,
the questionnaires described in Chapter 4 were used to conduct structured interviews of
patients who had undergone surgery for correction of their adolescent onset idiopathic
scoliosis, their parents and their surgeons. The questionnaires were designed
specifically to measure their concerns about scoliosis, concerns regarding surgery for
scoliosis, desires and goals of treatment, and expectations of scoliosis if not treated
(natural history) and expectations of desired and undesirable outcomes of treatment. In
the third stage, the Surgeon Questionnaire was used to conduct a national survey of all
surgeons involved in the management of adolescent spine deformity in Canada. The
specific aims of the thesis and hypotheses are elaborated and the corresponding
analyses described.
5.2 Study Design
This was a cross-sectional survey of patients, parents and surgeons involving a self-
administered questionnaire and structured personal interview.
5.3 Setting & Participants
The survey was nested within a randomized controlled trial comparing two
instrumentation systems for the surgical treatment of adolescent idiopathic scoliosis.
The trial was based at a single centre, The Hospital for Sick Children, Toronto, which is
the largest tertiary children’s hospital in Canada. The Division of Orthopaedic Surgery at
57
the Hospital for Sick Children covers a wide geographic area, serving a population of
approximately 5 million. Patients in this cohort resided in a variety of urban, suburban
and rural environments primarily in Southern and South Central Ontario.
Patients: Any child with a diagnosis of adolescent onset idiopathic scoliosis, who had
participated in the randomized controlled trial, and had completed a minimum of 2 years
follow-up at the time of their assessment for this study, was eligible to participate.
Parents: Either or both parents of these children.
Surgeons: Four surgeons at The Hospital for Sick Children were involved in this trial.
All four surgeons had received at least part of their paediatric orthopaedic fellowship
training at the same institution, but 3 of the 4 surgeons had subsequently practiced at
other institutions prior to their appointment at The Hospital for Sick Children.
Additionally, any surgeon in Canada who was actively involved in the surgical
management of children with adolescent idiopathic scoliosis was eligible to participate in
the general survey of surgeons.
5.4 Ethical Approval
Ethical approval was obtained from the Research Ethics Board of The Hospital for Sick
Children to recruit patients from the trial, and their parents to participate in this study.
Ethical approval was also obtained for conduct of the surgeon surveys. Informed
consent was obtained from all the patient and parent participants. The information sheet
and consent forms for patients and parents are included in the respective questionnaires
(Appendix A & B). Consent was presumed by the completion and return of the survey
by the surgeons.
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5.5 Recruitment
Eligible patients were identified from the database of the randomized controlled trial.
The patients and parents were approached at the time of their routine two-year post-
operative follow-up visit. Patients who had already completed their 2-year follow-up visit,
received a letter, signed by the patient’s surgeon as well as the primary investigator,
outlining the objectives of the survey along with copies of the questionnaires, and
seeking their consent to participate. The letter also informed them that they would
receive a telephone call within 2 weeks of receipt of the package. At this call, additional
information was provided and informed consent obtained from patients and parent/s to
conduct the interview. Arrangements were then made to schedule and complete the
patient and parental interviews. Patients and their parent/s were provided with the
respective questionnaires to allow them to read and complete them prior to the
scheduled interview. They were instructed not to discuss the questionnaire with each
other until after the interview.
5.6 The Interview
The patient and parent interviews were all conducted by the principal investigator, who
was not involved directly in the clinical care of the patient. Interviews were conducted at
a time and location convenient for the patient and parents. Participants were offered the
choice of having the interviews done at their home, a convenient non-medical setting or
at The Hospital for Sick Children outside of the outpatient clinic setting. The majority of
interviews were conducted in the patients’ homes. For those patients who resided at a
distance from Toronto, and who were unable or unwilling to travel to Toronto, and did not
wish to have the interviews done at home, the interview was conducted by telephone.
This occurred three times. Patients and their parent/s were interviewed separately from
59
each other, and their answers recorded on the patient and parental questionnaires
respectively.
5.7 Surgeon Survey
The four surgeons, who had participated in the randomized trial, were invited to
complete the surgeon’s questionnaire, which was self-administered.
The membership lists of the Scoliosis Research Society and the Paediatric Orthopaedic
Society of North America, as well as the personal directories of the surgeons at The
Hospital for Sick Children were used to identify all Canadian surgeons involved in the
surgical management of idiopathic scoliosis. A letter of invitation to participate in this
survey was sent to each of these surgeons along with information about the study. The
package included the survey for their completion and a stamped return envelope to mail
back the survey to the principal investigator. Concurrently, an electronic version of the
invitation and the survey was sent to all the surgeons for whom e-mail addresses were
available. Respondents were given the choice of returning the completed survey by e-
mail or printing a hard copy that could be mailed or faxed back. Approximately 2 weeks
after the initial mailing, surgeons’ offices were contacted and communication established
with the secretary or assistant of each of the surgeons to confirm receipt of the
questionnaire and to request completion. If the questionnaire had not been received,
another was mailed/e-mailed. This procedure was repeated at approximately 1 month
and 6 weeks after the initial mailing, unless the surgeon or assistant/secretary explicitly
communicated that the surgeon was unwilling or unable to participate in the survey.
75% participation was the target response rate.
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5.8 Analyses
5.8.1 Analysis of Concerns
I. Concerns Regarding Scoliosis (prior to surgery)
In Section IA of the Patient and Parental questionnaire, and Section VI of the Surgeon
questionnaire, respondents were asked to report how concerned they were prior to
surgery about a number of issues (because of scoliosis). Parents also rated their
perception of their child’s concerns for each of these issues. The magnitude of concern
was rated on a 6-point ordinal rating scale from “Not at all concerned” (0) to “Extremely
concerned” (5).
(a) Index of All Concerns Related to Scoliosis
The respondent’s ratings of level of concern for each of 21 items pertaining to concerns
regarding scoliosis were summed to produce a raw score of total concerns = Σ (Ci). The
ratio of the raw score of all concerns Σ (Ci) to the maximum possible score Σ (Cm),
multiplied by 100 generated the Index of All Concerns Related to Scoliosis which could
range from 0 (no concerns) to 100 (extreme concerns). These were reported for (i)
Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns, and (iv) Surgeons,
respectively. The Surgeon Index of All Concerns Related to Scoliosis was derived from
the corresponding Section VI of the Surgeon Questionnaire.
(b) Index of Presenting Concerns Related to Scoliosis
Of the 21 listed concerns, eight of these items can be categorized as concerns
pertaining to the patient’s “present” experience (at the time). The respondent’s level of
concern for each of these eight items pertaining to concerns for the present, were
summed to produce a raw score of presenting concerns = Σ (Cip). The ratio of the raw
score of presenting concerns Σ (Cip) to the maximum possible score Σ (Cmp), multiplied
by 100 generated the Index of Presenting Concerns Related to Scoliosis for (i) Patients,
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(ii) Parents, (iii) Parents’ perception of their child’s concerns, and (iv) Surgeons
respectively, which could range from 0 (no concerns) to 100 (extreme concerns).
(c) Index of Future Concerns Related to Scoliosis
Similarly the respondent’s ratings of level of concern for each of 13 items pertaining to
concerns for the future were summed to produce a raw score of future concerns = Σ
(Cif). The ratio of the raw score of future concerns Σ (Cif) to the maximum possible score
Σ (Cmf), multiplied by 100, produced the Index of Future Concerns Related to Scoliosis
for (i) Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns, and (iv)
Surgeons respectively, also yielding a range of scores from 0 (no future concerns) to
100 (extreme future concerns).
Aim 1: Describe and compare patients’, parents’ and surgeons’ concerns about
perceived problems of scoliosis.
Means and standard deviations of the Concerns Regarding Scoliosis (concerns prior to
treatment) were determined for (a) Index of All Concerns Related to Scoliosis, (b) Index
of Presenting Concerns Related to Scoliosis, and (c) Index of Future Concerns Related
to Scoliosis, for (i) Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns,
and (iv) Surgeons respectively. The mean and standard deviation scores for concerns
were determined for each of the 5 domains: (i) physical appearance, (ii) pain, (iii)
physical function, (iv) psychosocial: social function, emotions/self esteem, and (v) health.
Hypothesis 1: Patients’ (pre-treatment) concerns about scoliosis are different from their
Parents’ (pre-treatment) concerns.
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Hypothesis 2: Patients’ and Parents’ (pre-treatment) concerns about scoliosis are
different from Surgeons’ (pre-treatment) concerns.
Although patients (and parents) could be matched with their operating surgeon, the
surgeon’s responses regarding their concerns for scoliosis (Section VI of the Surgeon
Questionnaire) were not directed to each specific patient. Instead they were asked to
assume the role of a parent with a child who had scoliosis, who met their criteria for
surgery, and to report their concerns for this hypothetical child using their knowledge, as
a medical expert in this area, of the natural history of adolescent idiopathic scoliosis.
Surgeons reported two sets of concerns, for a hypothetical adolescent daughter and an
adolescent son who had scoliosis respectively, on the assumption that their concerns
might have been different depending on whether their child with scoliosis was their
daughter or son.
This strategy of exploring surgeons’ “concerns” was an attempt to make the comparison
between patients’, parents’ and surgeons’ concerns more credible. Surgeons were
unlikely to be “concerned” for patients in the same way patients or their parents would
be. As a hypothetical parent of a child with scoliosis however, a surgeon might be able
to express concerns (albeit hypothetical) such as a parent would. These “concerns”
might be different, because the surgeon’s knowledge and experience with this condition
in other patients would provide him/her with insight not normally available to a parent
who is a “lay person” in this field. Presumably, this insight is what surgeons share with
their patients and patients’ parents, which in turn influences the formulation of their
patients’ (and the parents’) concerns, desires and expectations.
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In order to compare surgeons’ concerns with patients’ and parents’ concerns, two
different analyses were performed.
1. Patients’ (and their parents’) concerns were compared with the concerns of their
respective surgeon (one of four surgeons at The Hospital for Sick Children) using
the appropriate gendered (daughter or son) responses of the surgeon. This
matched comparison used a repeated measures analysis of variance and paired
t-tests. Therefore, the same surgeon’s responses was matched to more than
one pair of patients and parents, i.e., to every patient that they treated.
2. Analysis of Variance and Student T-tests were used to compare the means
scores of the various indices of concerns of patients and parents with all
surgeons (the Hospital for Sick Children group as well as the Canadian
Surgeons).
Hypothesis 3: Patients’ (pre-treatment) concerns about scoliosis are different from their
Parents’ perception of their child’s (pre-treatment) concerns.
Patients were matched with their parents. Repeated measures analysis of variance and
paired t- tests were used to compare mean scores of (i) Patients, (ii) Parents, and (iii)
Parents’ perception of their child’s concerns, in order to test the above hypotheses. The
degree of concordance between the patients’ responses and their parents’ perception of
their responses was assessed using the Intraclass Correlation Coefficient (ICC).
64
II. Concerns Regarding Surgery (Undesirable Outcomes & Adverse Events)
In Section VIA of the Patient and Parent questionnaires, concerns about undesirable
outcomes or adverse events that might arise from surgery for scoliosis were rated on 6-
point ordinal rating scale from “Not at all concerned” (0) to “Extremely concerned” (5) for
each of these events. 24 possible complications or adverse events were categorized as
short term problems (11 items) or long term adverse outcomes (13 items).
(a) Index of Concerns for All Undesirable Events
A combined Index of Concerns for all Undesirable Events was generated from the ratio
of raw score of concerns for all 24 undesirable events Σ (Cut) to the maximum possible
score Σ (Cmt), multiplied by 100 for (i) Patients, (ii) Parents and (iii) Parents’ perception of
their child’s concerns, respectively.
(b) Index of Concerns for Short Term Undesirable Events
The respondent’s ratings of level of concern for each of the 11 short term events were
summed to produce a raw score of concerns for short term undesirable events = Σ (Cus).
The ratio of the raw score of concerns for short term undesirable events Σ (Cus) to the
maximum possible score Σ (Cms), multiplied by 100 generated the Index of Concerns for
Short Term Undesirable Events, following treatment for (i) Patients, (ii) Parents and (iii)
Parents’ perception of their child’s concerns, respectively.
(c) Index of Concerns for Long Term Undesirable Events
Similarly, the Index of Concerns for Long Term Undesirable Events following treatment,
was generated by the ratio of the raw score of concerns for long term undesirable
events, Σ (Cul) to the maximum possible score Σ (Cml), multiplied by 100 for (i) Patients,
(ii) Parents and (iii) Parents’ perception of their child’s concerns, respectively.
Aim 2: Describe and compare patients’, parents’ and parent’s perception of their child’s
concerns about surgery of scoliosis.
65
Means and standard deviations of the patients’ and parents’ Concerns Regarding
Surgery for Scoliosis (experienced prior to surgery) were determined using the Index of
Concerns for (a) All, (b) Short Term, and (c) Long Term Undesirable Events following
surgery for (i) Patients, (ii) Parents and (iii) Parents’ perception of their child’s concerns.
Hypothesis 4: Patients’ (pre-treatment) concerns about surgery for scoliosis are
different from their Parents’ (pre-treatment) concerns about surgery for scoliosis.
Hypothesis 5: Patients’ (pre-treatment) concerns about surgery for scoliosis are
different from their Parents’ perception of their child’s (pre-treatment) concerns about
surgery for scoliosis.
Repeated measures analysis of variance and paired t- tests were used to compare
mean scores of (i) Patients, (ii) Parents, and (iii) Parents’ perception of their child’s
concerns, in order to test the above hypothesis. The degree of concordance between
the patients’ responses and their parents’ perception of their responses was assessed
using the Intraclass Correlation Coefficient (ICC).
5.8.2 Analysis of Desires (wishes) and Goals of Surgery
Aim 3: Describe patients’ and parents’ desires (wishes) of the surgical treatment of
scoliosis and surgeons’ goals of surgery for scoliosis; and compare patients’ and
parents’ rankings of desires (wishes) of the surgical treatment of scoliosis with the
surgeons’ rankings of goals of surgery.
Desires were defined as patients’ (parents’) wishes regarding medical care; the
perception that a given event or outcome was wanted. These correspond to the goals of
66
treatment from the surgeons’ perspective. For this study, patient (parental) desires and
surgeon goals were operationalized in two ways.
I. Strength of Desires (Goals) of Surgery for Scoliosis
In Section IVA of the Patient and Parent Questionnaire, the respondent was asked to
report how much he/she wished or desired that the treatment (surgery) would
accomplish a particular objective or goal. This was rated on a 6-point ordinal rating
scale from “Not at all desired” (0) to “Very strongly desired” (5). This corresponded to
Section II of the Surgeon Questionnaire, in which surgeons were asked to report how
often each of these issues were included in their goals of surgery.
(a) Index of All Desires (Goals) of Surgery for Scoliosis
The respondent’s ratings of the level of desire for each of the 21 items or wishes of
surgery were summed to produce a raw score of total desires = Σ (Di). The ratio of the
raw score of all desires Σ (Di) to the maximum possible score Σ (Dm), multiplied by 100
generated the Index of All Desires of Surgery, which could range from 0 (no desires at
all) to 100 (maximum desires). These were determined for (i) Patients, (ii) Parents, and
(iii) Parents’ perception of their child’s desires. The corresponding Surgeon Index of All
Goals of Surgery was derived from Section II of the Surgeon Questionnaire.
(b) Index of Immediate Desires (Goals) of Surgery for Scoliosis
Of the 21 listed wishes, eight of these items could be categorized as desires for the
present, or more immediate objectives of surgery, while the remaining thirteen items
were desires for future objectives. The respondent’s ratings of the strength of wishes for
each of these eight items were summed to produce a raw score of immediate desires =
Σ (Dip). The ratio of the raw score of immediate desires Σ (Dip) to the maximum possible
score Σ (Dmp), multiplied by 100 generated the Index of Immediate Desires of Surgery for
(i) Patients, (ii) Parents, and (iii) Parents’ perception of their child’s wishes, which could
67
range from 0 (no desires at all) to 100 (maximum desires). The corresponding Surgeon
Index of Immediate Goals of Surgery was derived from same items of Section II of the
Surgeon Questionnaire.
(c) Index of Future Desires (Goals) of Surgery for Scoliosis
The respondent’s ratings of the level of desire for each of 13 items pertaining to desires
for the future were summed to produce a raw score of future desires = Σ (Dif). The ratio
of the raw score of future concerns Σ (Dif) to the maximum possible score Σ (Dmf),
multiplied by 100, produced the Index of Future Desires of Surgery for (i) Patients, (ii)
Parents, and (iii) Parents’ perception of their child’s desires, respectively, also yielding a
range of scores from 0 (no future desires) to 100 (maximum future desires). The
corresponding Surgeon Index of Future Goals of Surgery was derived from same items
of Section II of the Surgeon Questionnaire.
Means and standard deviations of the Desires of Surgery (desires prior to treatment)
were determined for (a) Index of All Desires (Goals) of Surgery, (b) Index of Immediate
Desires (Goals) of Surgery, and (c) Index of Future Desires (Goals) of Surgery, for (i)
Patients, (ii) Parents, and (iii) Parents’ perception of their child’s Desires. The means
(ranges) and standard deviations of the levels of desires were also determined for each
item on the list of wishes of surgery in Section IVA of the patient and parent
questionnaires, as well as for the five domains: (i) physical appearance, (ii) pain, (iii)
physical function, (iv) psychosocial: social function, emotion/self esteem, and (v) health.
The corresponding means (ranges) and standard deviations of the Frequency of Goals
for Surgeons were determined from responses to Section II of the Surgeon
questionnaire.
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Hypothesis 6: Patients’ (pre-treatment) desires are different from their Parents’ (pre-
treatment) desires of surgery for scoliosis.
Hypothesis 7: Patients’ (pre-treatment) desires are different from their Parents’
perception of their child’s (pre-treatment) desires of surgery for scoliosis.
Repeated measures analysis of variance and paired t- tests were used to compare
mean scores of (i) Patients, (ii) Parents, and (iii) Parents’ perception of their child’s
desires, in order to test the above hypothesis.
II. Desires & Goals of Surgery Ranked in Order of Importance
The second way in which patients’ and parents’ desires (wishes) of surgery were
measured was featured in Section IVB of the Patient and Parent Questionnaires.
Respondents were asked to rank their top 10 wishes or desires in order of “most to least
important reason” for undergoing surgery. Surgeons were similarly asked to rank their
goals in order of “most to least important reason” in Section III of the Surgeon
Questionnaire.
The overall rankings from most to least desired priorities were determined for patients
and parents respectively. Similarly, the overall rankings of surgeon goals were
determined from Section III of the Surgeon Questionnaire.
Hypothesis 8: Patients’ and Parents’ ranking of importance of (pre-treatment) desires
of surgery are different from Surgeons’ ranking of importance of goals of surgery.
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The rank order of priorities was compared between patients, parents and surgeons using
Spearman rank correlation coefficients and Kendall’s W (coefficient of concordance) to
determine the association between and the extent of agreement among patients, parents
and surgeons ranking of each of the desires (goals) as well as by domain for: Patient
versus Parent; Patient versus Surgeon; and Parent versus Surgeon.
5.8.3 Analysis of Expectations
Expectations were defined as the estimation of the likelihood that a given event or
outcome might occur. Expectations could be directed towards the condition itself (the
prognosis or natural history of the untreated condition) or towards the outcomes of
treatment, which could include both desired and undesirable outcomes.
I. Expectations of Scoliosis: Perception of Natural History (Prior to Surgery)
In Section IIIA of the Patient and Parent questionnaires, the respondents were asked to
report their perception of the likelihood that a given event might occur in the future
because of the scoliosis, if it was not treated. This likelihood was rated on an eight point
ordinal scale of probabilities ranging from “Not a problem: 0%” (0) to “Extremely likely: >
95%” (7). The surgeon’s perspective on the natural history of untreated idiopathic
scoliosis was measured in Section I of the Surgeon Questionnaire. The surgeon
respondent was asked to consider a typical patient with adolescent idiopathic scoliosis
who met that surgeon’s criteria for recommending surgery, and to report the likelihood
that each of the listed events might occur, using a range of probabilities from “Never:
0%” (0) to “Extremely likely: > 95%” (7).
70
Aim 4: Describe and compare patients’, parents’ and surgeons’ expectations of the
natural history of scoliosis.
Means and standard deviations were determined for the perceived likelihood that a given
event might occur in the future because of the scoliosis, if it was not treated from the
perspective of (i) Patients, (ii) Parents, (iii) Parents’ perception of their Child’s
expectations, and (iv) Surgeons, respectively. The mean and standard deviations for the
likelihood of events were also determined for each of the 5 domains: (i) physical
appearance, (ii) pain, (iii) physical function, (iv) psychosocial: social function,
emotion/self esteem, and (v) health.
Hypothesis 9: Patients’ (pre-treatment) expectations about scoliosis are different from
their Parents’ (pre-treatment) expectations about scoliosis.
Hypothesis 10: Patients’ (pre-treatment) expectations about scoliosis are different from
their Parents’ Parents’ perception of their child’s (pre-treatment) expectations about
scoliosis.
Patients were matched with their parents. Repeated measures analysis of variance and
paired t- tests were used to compare mean scores of (i) Patients, (ii) Parents, and the
(iii) Parents’ perception of their child’s expectations.
Hypothesis 11: Patient’s and Parents’ expectations of the natural history of scoliosis
are different from Surgeon’s expectations of the natural history.
Surgeons’ expectations were compared with patients’ and parents’ expectations, using
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1. Repeated measures analysis of variance and paired t-tests, when patients’ (and
their respective parents’) expectations were compared with the expectations of
their respective surgeon (surgeons at The Hospital for Sick Children).
2. Analysis of Variance and Student t-tests to compare the means scores of the
expectations of patients and parents with those of all surgeons surveyed (all
Canadian surgeons’ responses).
II. Expectations of Desired Outcomes of Surgery for Scoliosis
In this study, expectations of surgery for scoliosis were operationalized in two ways.
A. Likelihood or Probability of a Desired Result (Expectancy)
In Section VA of the Patient and Parent Questionnaires, the respondents were asked to
report how likely they think it is that surgery will accomplish each of the 21 listed goals.
Their perception of the likelihood of each result occurring was rated on an 8-point ordinal
rating scale ranging from “Never: 0%” (0) to “extremely likely: >95%” (7). The surgeons’
perception of the expected outcomes of surgery, were similarly measured in Section IV
of the Surgeon Questionnaire. The surgeon respondent was asked to report their
perception of the likelihood of each of the same listed events using the same rating
scale.
(a) Index of All Expectations of Surgery for Scoliosis
The respondent’s ratings of the likelihood for each of 21 items of surgery, were summed
to produce a raw score of total expectations = Σ (Ei). The ratio of the raw score of all
expectations Σ (Ei) to the maximum possible score Σ (Em), multiplied by 100 generated
the Index of All Expectations of Surgery, which could range from 0 (no expectations) to
100 (maximum expectations). These were determined for (i) Patients, (ii) Parents, and
72
(iii) Surgeons. The Surgeon Index of All Expectations of Surgery was derived from
Section II of the Surgeon Questionnaire.
(b) Index of Immediate Expectations of Surgery for Scoliosis
Of the 21 listed wishes, eight of these items could be categorized as expectations for
more immediate objectives of surgery, while the remaining thirteen items were
expectations for future objectives. The respondent’s ratings of the likelihood for each of
these eight items were summed to produce a raw score of immediate expectations = Σ
(Eip). The ratio of the raw score of immediate expectations Σ (Eip) to the maximum
possible score Σ (Emp), multiplied by 100 generated the Index of Immediate Expectations
of Surgery for (i) Patients, (ii) Parents, and (iii) Surgeons respectively, which could range
from 0 (no expectations) to 100 (maximum expectations).
(c) Index of Future Expectations of Surgery for Scoliosis
The respondent’s ratings of the likelihood for each of 13 items pertaining to expectations
for the future were summed to produce a raw score of future expectations = Σ (Eif). The
ratio of the raw score of future expectations Σ (Eif) to the maximum possible score Σ
(Emf), multiplied by 100, produced the Index of Future Expectations of Surgery for (i)
Patients, (ii) Parents, and (iii) Surgeons respectively, also yielding a range of scores
from 0 (no expectations) to 100 (maximum expectations).
B. Minimal Acceptable Result to be Satisfied (Value)
The second method, by which patient and parental expectations of surgery were
measured, was featured in Section VB of the Patient and Parent questionnaire. The
minimal acceptable result was defined as the minimum change (improvement or
reduction of future risk) that would have been acceptable to the patient or parent in order
73
to be satisfied. This was rated on a 6-point ordinal scale ranging from “no change” (0) to
“very large change” (5) for each of the 21 listed items.
Aim 5: Describe and compare patients’, parents’ and surgeons’ expectations of desired
outcomes of surgery for scoliosis.
Means and standard deviations of the patients’ and parents’ and surgeons’
Expectations of Desired Outcomes of Surgery for Scoliosis were determined using the
Index of Expectations for (a) All, (b) Immediate, and (c) Future expectations of surgery
for (i) Patients’, (ii) Parents’ and (iii) Surgeons, respectively. The mean and standard
deviations for the likelihood of events were also determined for each of the 5 domains: (i)
physical appearance, (ii) pain, (iii) physical function, (iv) psychosocial: social function,
emotion/self esteem, and (v) health.
Hypothesis 12: Patients’ (pre-treatment) expectations of surgery for scoliosis are
different from parents’ (pre-treatment) expectations of surgery.
Hypothesis 13: Patients’ and Parents’ (pre-treatment) expectations of surgery for
scoliosis are different from surgeons’ (pre-treatment) expectations of surgery.
Patients were matched with their parents and their treating surgeon. Repeated
measures analysis of variance and paired t- tests were used to compare mean scores of
expectations of (i) Patients, (ii) Parents, and their treating (iii) Surgeons. Analysis of
variance and student t-tests were used when the mean scores of Patients’, Parents’ and
all Surgeons’ expectations were compared.
74
III. Expectations of Undesirable Events of Surgery for Scoliosis
In Section VI B of the Patient and Parent questionnaire, and Section V of the Surgeon
Questionnaire, respondents were asked to provide their estimation of the likelihood of
undesirable events or adverse outcomes that they believed might be associated with
surgery. These were rated on an 8-point ordinal rating scale of probabilities ranging
from “Never: 0%” (0) to “Extremely likely: > 95%” (7). The events could be categorized
as short term problems (11 items) as well as long term adverse outcomes (13 items).
(a) Index of Expectations for all Undesirable Events
A combined Index of Expectations for all Undesirable Events was generated from the
ratio of raw score of expectation for all 24 undesirable events Σ (Eu) to the maximum
possible score Σ (Emu), multiplied by 100 for (i) Patients, (ii) Parents and (iii) Surgeons,
respectively.
(b) Index of Expectations for Short Term Undesirable Events
The respondent’s ratings of the likelihood for each of the 11 short term events were
summed to produce a raw score of expectations for short term undesirable events = Σ
(Eus). The ratio of the raw score of expectations for short term undesirable events Σ (Eus)
to the maximum possible score Σ (Ems), multiplied by 100 generated the Index of
Expectations for Short Term Undesirable Events following treatment, for (i) Patients, (ii)
Parents and (iii) Surgeons, respectively.
(c) Index of Expectations for Long Term Undesirable Events
Similarly, the Index of Expectations for Long Term Undesirable Events following
treatment, was generated by the ratio of the raw score of expectations for long term
undesirable events, Σ (Eul) to the maximum possible score Σ (Eml), multiplied by 100 for
(i) Patients, (ii) Parents and (iii) Surgeons expectations, respectively.
75
Aim 6: Describe and compare patients’, parents’ and surgeons’ expectations of
undesirable outcomes of surgery for scoliosis.
Means and standard deviations of the patients’ and parents’ Expectations of Undesirable
Events of Surgery for Scoliosis were determined using the Index of Expectations for (a)
All, (b) Short Term, and (c) Long Term Undesirable Events following surgery for (i)
Patients, (ii) Parents and (iii) Surgeons, respectively.
Hypothesis 14: Patients’ (pre-treatment) expectations of undesirable events of surgery
for scoliosis are different from Parents’ expectations of undesirable events of surgery.
Hypothesis 15: Patients’ and Parents’ (pre-treatment) undesirable expectations of
surgery for scoliosis are different from Surgeons’ undesirable expectations of surgery.
Patients were matched with their parents and their treating surgeon. Repeated
measures analysis of variance and paired t- tests were used to compare mean scores of
(i) Patients, (ii) Parents, and their treating (iii) Surgeons. Analysis of variance and
student t-tests were used when the mean scores of Patients’, Parents’ and all Surgeons’
expectations were compared.
5.8.4 Other Data
In addition to the interview, the following data were collected separately as part of the
protocol of the randomized controlled trial in which these patients were participants.
1. Scoliosis Research Society (SRS) outcomes instrument (includes a measure of
satisfaction)
2. Quality of Life Profile for Spinal Deformities (QLPSD)
3. Activities scale for kids
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4. Deformity assessment including clinical, radiographic and photographic parameters
5. Demographic information including educational level, employment status and socio-
economic status of parents.
5.9 Sample size and power estimation
If α is set at 0.01 (arbitrarily to adjust for multiple comparisons) and the standard
deviation of the differences in mean scores is conservatively estimated to be about 25%,
for the repeated measures analysis of variance, a sample size of 77 triads (patients,
parents, surgeons) has 80% power to detect a mean difference of 10% points. A sample
size of 36 triads has 80% power to detect 15% point difference, which would be a
clinically more meaningful difference in index scores. By June of 2001, 64 patients
enrolled in the randomized controlled trial had undergone surgery and had completed 2-
years of post-operative follow-up. These patients and their parents were eligible for
recruitment in this study.
5.10 Respondents
64 patients, who were enrolled in the randomized controlled trial, had completed at least
2 years follow-up by June 30, 2001. This was the target population for this study. 55
patients and their parents completed the interviews, for an 86% response rate. 48 of the
55 patients were girls. The proportion of boys in this sample 7/55 (12.7%) is in keeping
with the gender distribution of adolescent idiopathic scoliosis. The age of these patients
at the time of the interviews ranged from 12 years to 18.3 years, with an average age of
14.3 years (SD: 1.5 years).
26 of these interviews were conducted in the patients’ homes. The average distance
traveled to and from these interviews was 135 kilometres (range: 10 km to 543 km). 25
77
interviews were conducted in a non-clinic setting (family conference room) at the
Hospital for Sick Children. Families were reimbursed for their parking and traveling
expenses, if they were coming to the Hospital for Sick Children solely for the purpose of
this interview. Three interviews were conducted over the telephone. Two of these
patients lived in Northern Ontario (Sault St. Marie), and one had moved to Ohio in the
United States. The geographic distribution of the participants is noted in Appendix 8.
All four orthopaedic surgeons of the patients who participated in the trial completed the
Surgeon Survey.
Across Canada, 33 orthopaedic surgeons were initially identified for the Surgeon Survey.
Two of these had retired and one had relocated overseas, and were therefore excluded.
Of the remaining 30 surgeons surveyed, 24 completed and returned their surveys by e-
mail, fax or regular mail, for an 80% response rate. One surgeon returned the
completed survey but explicitly forbid its use unless his institution’s and his “name clearly
appear in the research paper and not as an acknowledgement”. Since the completion of
the survey does not meet accepted criteria for authorship, this surgeon’s data were
excluded. The remaining surgeons did not return the survey despite three reminders.
The participating surgeons practice in British Columbia, Alberta, Manitoba, Ontario,
Quebec, and Nova Scotia. 20/24 (83%) of these surgeons were paediatric orthopaedic
fellowship trained, while the four had completed spinal fellowships only. Three of the 24
had both paediatric orthopaedic and spine fellowship training. All 24 surgeons practiced
in University affiliated teaching hospitals and were involved in training orthopaedic
residents. 18/24 (75%) were also involved with fellowship training. 19/24 (79%)
practiced in a children’s hospital. 16 surgeons had some type of membership status with
the Scoliosis Research Society, while eight were not members. The median “years in
78
practice” was between 15 to 20 years. 10 of these surgeons had practiced for at least
for 20 years, while seven had practiced for less than 10 years. The median percentage
of surgical practice devoted to scoliosis was 10% to 25%, with only 6 surgeons devoting
greater than 50% of their surgical time to scoliosis surgery.
5.11 Non-respondents
There were different reasons why the 9 sets of patients and parents did not participate.
Not locatable (2): In two instances, the families could not be contacted at the last
recorded address and telephone numbers. The services of a private investigator failed
to locate one of these patients, and no follow-up information was available on this
patient. The second patient and her parents were involved in the initial pilot testing of
the questionnaires, but at the 2-year follow-up time point could not be contacted either
by mail or by telephone. At the pilot interview, the patient and her parents were very
enthusiastic to participate and at the time seemed pleased with the outcomes of surgery
to date.
Willing but unavailable for interview (1): An interview was arranged at the family’s
home, but neither the patient nor the mother was present at the scheduled time. They
had forgotten about the meeting, which was rescheduled. They were not present at the
second visit to the home either. A message was left for the family to contact the primary
investigator if they wished to reschedule the interview at a different time. There was no
response.
In the following six cases the patient and/or parents were unwilling to participate. All
were willing to explain their reasons over the telephone.
79
Patient willing/Parents not (2): In one instance, the patient was a 17 year old boy,
who at initial contact stated that he was willing to participate and was prepared to drive
to Toronto for the interviews. A second call was made to speak with his parents who
were not present at the first call. The patient’s mother did not want to participate,
because she wanted him to “get on with his life”. She agreed to think about it and a
second telephone call was scheduled. At the second call the patient’s mother reiterated
that she did not wish to participate primarily because of the “timing” and that her son was
now “17 ½ - life is busy”. She was however willing to elaborate on their experience over
the telephone. She stated that things were “emotionally very hard” prior to surgery.
Bracing had not worked. Her son had refused to wear the brace during the day. After
surgery, she reported that her son “took a long time to recover both physically and
emotionally”, but he had now “moved beyond it”. He had recently obtained his driver’s
license and was looking at universities. She would have liked “the opportunity to speak
with other parents directly”. She felt that her son would “like to forget it”. She was happy
with the results of the surgery and felt that her son’s responses “would (also) be
extremely positive”. She stated that her husband felt the same way.
In the second instance, the family had received the package. The 19 year old patient
stated that she was willing to participate, but that her mother was not. A second call was
made to speak with her mother who confirmed that she did not wish to participate. She
stated that her daughter had had “a very difficult time” prior to surgery. The diagnosis
was made quite late and the scoliosis “was too severe to brace”. She reported that her
daughter was anorexic and “wanted to die”. She thought that the “care (her daughter
received was great”. “Surgery was the best thing that happened”. Although, the mother
said she would talk to her daughter again and think about participating in the interview,
she did not respond to the voice mail message left to remind her.
80
Parents willing; Patient not (2): One 16 year old patient refused to participate in the
study or discuss her experience over the telephone because she was “busy”, but gave
permission to talk with her parents. Her parents stated that they were willing to
participate, and did return the completed parent questionnaires. Over the telephone, the
mother stated that her daughter had a problem with her scar following surgery. She was
also “uncomfortable talking about her back”. She had “emotional issues” at school.
Nevertheless she felt that her daughter was satisfied with the surgery and now “wears
everything”. She was currently choosing which university to attend.
One 17 year old girl had had a post-operative complication that necessitated removal of
the rods one day after surgery and replacing the instrumentation a few days later. Both
mother and father were willing to participate but reported that in discussing this with their
daughter, she was unwilling, as “she would like to forget the experience”.
Neither Patient nor Parent willing (2): One family declined the invitation to participate
because they were busy moving house and changing jobs, and did not have the time.
On the telephone the mother reported her satisfaction with the results of the surgery. At
1 year following surgery things were “perfect”, but at 2 years things seemed to get worse
because the “hump (was) coming back”. The patient was also busy with work. She
reported that she was “very satisfied” with surgery. She reported no back pain and had
no problems with her scar.
Finally, one family was unwilling to participate because their 15 year old daughter had
experienced a significant neurological complication following surgery. Neither the
patient nor the parents wished to be interviewed. They felt that further discussion
“doesn’t help anymore”.
81
CHAPTER 6 Concerns Regarding Scoliosis & Surgery for Scoliosis
6.1 Concerns Regarding Scoliosis
Aim 1 of this thesis was to describe and compare patients’, parents’ and surgeons’
concerns about perceived problems of scoliosis. Respondents were asked to rate the
magnitude of their concerns regarding scoliosis (prior to surgery) for 21 items on a 6-
point ordinal scale of 0 (not at all concerned) to 5 (extremely concerned). Means and
standard deviations of the Concerns Regarding Scoliosis (concerns prior to treatment)
were determined for (a) Index of All Concerns Related to Scoliosis, (b) Index of
Presenting Concerns Related to Scoliosis, and (c) Index of Future Concerns Related to
Scoliosis, for (i) Patients, (ii) Parents, (iii) Parents’ perception of their child’s concerns,
and (iv) Surgeons respectively. The mean and standard deviation scores for concerns
were determined for each of the 5 domains: (i) physical appearance, (ii) pain, (iii)
physical function, (iv) psychosocial function, and (v) health.
6.1.1 Patients’ Concerns Regarding Scoliosis (Prior to Surgery)
Patients reported a wide range in their overall level of concern about their scoliosis prior
to surgery. The magnitude of overall concern as measured by the mean Index of All
Concerns was 51.01 (out of a maximum 100). Patients’ level of concern for their future
(Index of Future Concerns Related to Scoliosis) was identical to their level of concern for
the “present” (Index of Presenting Concerns related to Scoliosis). Analyzed by domain,
patients report that prior to surgery they were very concerned about items pertaining to
Physical Appearance and Back Pain; somewhat concerned about Physical Function
issues, and only slightly concerned about Health related and Psychosocial issues.
(See Table 6.1. & Figure 6.1)
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Table 6.1 Patients’ Concerns Regarding Scoliosis Mean scores (std. dev); Ranges All Patients (n=55) Girls (n=48) Boys (n=7)
Index of All Concerns
51.01 (20.79) 2.86 – 91.43
51.19 (20.73) 2.86 – 91.43
49.80 (22.78) 8.57 – 82.86
Index of Presenting Concerns
52.09 (21.15) 0 – 90.00
52.66 (20.71) 0 – 90.00
48.21 (25.40) 7.50 – 80.00
Index of Future Concerns
50.35 (22.08) 5.00 – 92.00
50.29 (22.10) 4.62 – 92.31
50.77 (23.67) 9.23 – 84.62
Appearance Concerns
69.27 (24.10) 0 - 100
69.79 (23.02) 0 – 100
65.71 (32.59) 0 – 100
Pain Concerns
65.45 (21.62) 0 - 100
66.94 (20.58) 0 – 93.33
55.24 (27.41) 26.67 – 100
Physical Function Concerns
50.91 (22.14) 0 – 96.00
50.50 (22.47) 0 – 96.00
53.71 (21.15) 20.00 – 80.00
Psychosocial Concerns
43.27 (27.07) 0 - 100
42.86 (26.90) 0 – 100
46.12 (30.30) 0 – 82.86
Health Concerns
44.73 (28.14) 0 - 100
45.52 (28.21) 0 - 100
39.29 (29.22) 0 – 75.00
Patients' Concerns Regarding Scoliosis
0.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
All Concerns PresentingConcerns
FutureConcerns
AppearanceConcerns
PainConcerns
FunctionConcerns
PsychosocialConcerns
HealthConcerns
Mea
n In
dex
All PatientsGirlsBoys
Figure 6.1 Patients’ mean level of concerns overall and by domain, with standard deviations.
83
Analyzed by individual items, patients reported a wide range of concerns, from “not at all
concerned” to “extremely concerned” (0 – 5) for all of these items. Patients reported that
as a result of their scoliosis they had greatest concerns about the following items prior to
surgery (mean score out of maximum of 5; standard deviation).
i. Physical appearance in the future (3.65; 1.37): 64% (35/55) of patients reported that
they were either “very concerned” or “extremely concerned” about the effect of
scoliosis on their future physical appearance;
ii. Having to wear a brace (3.47; 1.80): 62% (34/55) of patients reported that they were
either “very concerned” or “extremely concerned” about having to wear a brace
because of their scoliosis;
iii. Risk of future back pain (3.47; 1.2): 53% (29/55 ) of patients reported that they were
either “very concerned” or “extremely concerned” about future back pain due to their
scoliosis;
iv. Physical appearance at the time (3.27; 1.37): 47% (26/55) of patients reported that
they were either “very concerned” or “extremely concerned” about the effect of
scoliosis on their present (prior to surgery) physical appearance; and
v. Future physical activities (3.20; 1.25): 45% (25/55) of patients reported that they
were either “very concerned” or “extremely concerned” about the effect of scoliosis
on their physical activities in the future.
Overall, patients were least concerned about the effects of scoliosis on sexual function;
friendships and future relationships; their lifespan; on future pregnancy and childbirth; or
on their future career and employment prospects, with at least half the 55 patients
surveyed reporting that they were “hardly” or “not at all concerned” about these issues.
However, there were at least some patients, between 7/55 (15%) and 14/55 (25%), who
reported that they were “very concerned” or “extremely concerned” about these issues.
84
The boys in this cohort were not very different from the girls, sharing four of the top five
concerns of girls. “Having to wear a brace” was one of the top five concerns for girls,
which in aggregate seemed less of a concern for boys. However, three of seven boys
did in fact report that they were “very concerned” or “extremely concerned” about brace-
wear, while the other four reported that they were “hardly” or “not at all concerned” about
this. The boys seemed somewhat more concerned about the effect of scoliosis on their
future self esteem than girls.
6.1.2 Parents’ Concerns Regarding Scoliosis (Prior to Surgery)
Parents reported a wide range in their overall level of concern about their children’s
scoliosis prior to surgery. In general, parents had greater concerns and a larger number
of serious concerns. The magnitude of overall concern as measured by the mean Index
of All Concerns was 66.56 (out of a maximum 100). Parents’ level of concern for their
children’s future (Index of Future Concerns Related to Scoliosis) was slightly greater
than their level of concern for the “present” (Index of Presenting Concerns related to
Scoliosis). Analyzed by domain, parents report that prior to their child’s surgery they
were extremely concerned about items pertaining to their child’s Physical Appearance;
very concerned about items related to Back Pain; and somewhat concerned about
Health, Psychosocial and Physical Functional consequences of scoliosis.
(See Table 6.2. & Figure 6.2.)
85
Table 6.2 Parents’ Concerns Regarding Scoliosis Mean scores (std. dev); Ranges All Parents
(n=53) Parents of Girls
(n=46) Parents of Boys
(n=7) Index of All Concerns
66.56 (16.36) 26.67 – 94.29
68.07 (15.48) 35.24 – 94.29
56.60 (19.72) 26.67 – 83.81
Index of Presenting Concerns
63.40 (20.14) 17.50 – 100
66.20 (18.08) 17.50 - 100
45.00 (24.71) 17.50 – 87.50
Index of Future Concerns
68.51 (17.40) 32.31 – 96.92
69.23 (16.87) 38.46 – 96.92
63.74 (21.44) 32.31 – 89.23
Appearance Concerns
84.53 (16.24) 20.00 - 100
85.87 (16.27) 20.00 – 100
75.71 (13.97) 50.00 – 90.00
Pain Concerns
71.07 (19.78) 20.00 - 100
73.33 (18.49) 20.00 – 100
56.19 (23.05) 33.33 – 100
Physical Function Concerns
62.11 (22.00) 8.00 - 100
64.17 (20.24) 8.00 – 96.00
48.57 (29.61) 12.00 – 100
Psychosocial Concerns
63.40 (21.45) 8.57 – 100
64.72 (20.31) 14.29 – 100
54.69 (28.16) 8.57 – 88.57
Health Concerns
65.28 (21.20) 20 - 100
65.98 (21.77) 20.00 - 100
60.71 (17.66) 30.00 – 75.00
Parents' Concerns Regarding Scoliosis
0.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
All Concerns PresentingConcerns
FutureConcerns
AppearanceConcerns
PainConcerns
FunctionConcerns
PsychosocialConcerns
HealthConcerns
Mea
n In
dex
Scor
es
All ParentsGirls' ParentsBoys' Parents
Figure 6.2. Parents’ mean level of concerns overall and by domain, with standard deviations.
86
Analyzed by individual items, parents also reported a wide range of concerns for most of
these items. The following list of items represents parents’ greatest concerns about their
child’s scoliosis (mean score out of maximum of 5; standard deviation) with the
percentage (number) of parents reporting that they were either “extremely concerned” or
“very concerned” about the effect of scoliosis on these items.
i. Future physical appearance (4.36; 0.81): 91% (48/53) of parents reported that they
were either “extremely concerned” or “very concerned” about the effect of scoliosis
on their child’s future physical appearance;
ii. Risk of future back pain (4.17; 0.98): 77% (41/53) of parents were either “extremely
concerned” or “very concerned” about the effect of scoliosis on their child’s future risk
of back pain;
iii. Present physical appearance (4.09; 1.1): 83% (44/53) of parents were either
“extremely concerned” or “very concerned” about the effect of scoliosis on their
child’s physical appearance at the time prior to surgery;
iv. Emotional well-being (present and future) (4.0; 1.23): 74% (39/53) of parents;
v. Future self esteem (3.96; 1.1): 72% (38/53) of parents;
vi. General health (3.92; 1.23): 64% (34/53) of parents;
vii. Future physical activities (3.91; 1.1): 72% (38/53) of parents;
viii. Risk of lung and heart problems (3.79; 1.52): 72% (38/53) of parents;
ix. Present self esteem (3.51; 1.4): 57% (30/53) of parents.
x. future recreation (30/53 [57%])
xi. having to wear a brace (30/53 [57%])
In addition, 24/45 (53%) parents of girls with scoliosis were “very concerned” or
“extremely concerned” about the effect of scoliosis on their daughter’s prospects of
future pregnancy and childbirth. About 1/3 of the parents surveyed were also “very
87
concerned” or “extremely concerned” about the effects of scoliosis on their child’s
prospects of employment and careers, future relationships and marriage, and the
possibility of a shorter life expectancy.
Overall, parents were least concerned about the effects of scoliosis on their child’s future
sexual function, and present friendships and relationships with 24/53 (45%) and 22/53
(42%) reporting that they were either “hardly” or “not at all concerned” about these
issues. However, 11/53 (21%) parents did report feeling “very concerned” or “extremely
concerned” about these issues.
On average, parents’ of girls with scoliosis had similar types of concerns as did parents’
of sons with scoliosis, with nine of the top ten concerns being the same, but in slightly
different order of priorities. However, parents of girls had greater concerns about the
effect of scoliosis on their daughters in all items than did parents of boys, with the
exception of with the exception of the items pertaining to future health, life expectancy,
and future lung and heart problems. Parents’ of boys with scoliosis reported their
highest concern about the risks of scoliosis on the future general health of their sons,
and also were more concerned about the potential effects of scoliosis on the longevity of
their sons than parents of girls with scoliosis.
6.1.3 Parents’ Perception of their Child’s Concerns Regarding Scoliosis
Parents also rated what they thought their child’s level of concern for each of the items
would be, blinded to their child’s responses. These are described and compared to the
patients’ responses in Section 6.1.5.
88
6.1.4 Surgeons’ Concerns Regarding Scoliosis
Surgeons were asked to imagine that they had a child with adolescent onset idiopathic
scoliosis that needed surgery, and to report what their “concerns” about their child’s
scoliosis might be, both if this was a daughter and son, respectively.
In general, surgeons had fewer and smaller concerns. Surgeons did not share the same
concerns among themselves. On average (by domain), surgeons were somewhat
concerned about physical appearance, slightly concerned about psychosocial issues
and pain, but were hardly concerned about the functional or health consequences of
scoliosis. The surgeons’ concerns for their daughter were the same as for their son, but
marginally higher.
(See Table 6.3)
Table 6.3 Surgeons’ Concerns Regarding Scoliosis All Surgeons’
Concerns for Daughters (n = 24)
All Surgeons’ Concerns for Sons (n = 24)
HSC Surgeons’ Concerns for
Daughters (n=4) Index of
All Concerns 33.93 (10.91) 6.80 – 52.38
28.23 (12.13) 6.80 – 51.02
22.45 (10.95) 6.80 – 31.97
Index of Presenting Concerns
34.97 (11.63) 5.36 - 55.36
29.91 (13.11) 5.36 – 55.36
25.45 (13.71) 5.00 – 36.00
Index of Future Concerns
33.29 (11.26) 7.69 – 50.55
27.20 (12.39) 5.49 – 48.35
20.60 (9.76) 7.69 – 29.67
Appearance Concerns
50.60 (14.12) 14.29 – 71.43
47.32 (14.73) 14.29 – 71.43
39.29 (17.00) 14.29 – 50.00
Pain Concerns
33.53 (16.16) 0 – 61.90
27.68 (16.24) 0 – 61.90
21.43 (14.81) 0 – 33.33
Physical Function Concerns
27.50 (12.66) 2.86 – 57.14
22.50 (13.84) 0 – 57.14
15.71 (9.76) 2.86 – 25.71
Psychosocial Concerns
37.41 (11.46) 8.16 – 53.06
32.78 (15.26) 0 – 53.06
28.06 (13.37) 8.16 – 36.73
Health Concerns
27.83 (15.80) 0 – 60.71
18.30 (13.16) 0 – 42.86
13.39 (11.80) 0 – 28.57
89
Analyzed by individual items, surgeons’ biggest concerns about their hypothetical child’s
scoliosis would have been about the effect of scoliosis on their child’s: (mean score out
of maximum of 5 for daughter; son respectively)
i. Future physical appearance (3.71; 3.50)
ii. Present physical appearance (3.38; 3.13)
iii. Future Emotional well-being (3.33; 3.07)
iv. Present Self esteem (3.25; 3.07)
v. Present Emotional well-being (3.21; 3.00)
vi. Future Self-esteem (3.17; 3.00)
Surgeons from the Hospital for Sick Children had the identical order of concerns as other
Canadian surgeons, but on average had consistently lower concerns for each of the
domains and items. All four surgeons from The Hospital for Sick Children listed the
identical level of concerns for their hypothetical daughters and sons with scoliosis for
each item, except for the item on pregnancy and childbirth.
90
6.1.5 Comparison of Patients’, Parents’ and Surgeons’ Concerns regarding
Scoliosis
Repeated measures ANOVA and paired T tests were used to make the respective
comparisons.
Table 6.4 Comparison of Concerns Regarding Scoliosis: means (std.dev) & ranges
Patients Parents Parents’ perception of
their child
Surgeons (HSC)
Index of All Concerns
51.01 (20.79)
2.86 – 91.43
66.56 (16.36)
26.67 – 94.29
51.43 (22.55)
0 - 96.19
22.45 (10.95)
6.80 – 31.97
Index of Presenting Concerns
52.09 (21.15)
0 – 90.00
63.40 (20.14)
18.00 – 100
55.14 (25.81)
0 – 100
25.45 (13.71)
5.00 – 36.00
Index of Future Concerns
50.35 (24.13)
5.00 – 92.00
68.51 (17.40)
32.31 – 96.92
49.14 (23.03)
0 – 93.85
20.60 (9.76)
7.69 – 29.67
Appearance
Concerns
69.27 (24.10)
0 - 100
84.53 (16.24)
20.00 - 100
74.91 (25.01)
0 - 100
39.29 (17.00)
14.29 – 50.00
Pain
Concerns
65.45 (21.62)
0 - 100
71.07 (19.78)
20.00 - 100
61.89 (28.57)
0 – 100
21.43 (14.81)
0 – 33.33
Physical Function
Concerns
50.91 (22.14)
0 – 96.00
62.11 (22.00)
8.00 - 100
49.89 (25.15)
0 – 100
15.71 (9.76)
2.86 – 25.71
Psychosocial
Concerns
43.27 (27.07)
0 - 100
63.40 (21.45)
8.57 – 100
46.95 (27.32)
0 – 100
28.06 (13.37)
8.16 – 36.73
Health
Concerns
44.73 (28.14)
0 - 100
65.28 (21.20)
20 - 100
41.60 (26.18)
0 – 95.00
13.39 (11.80)
0 – 28.57
91
Patients', Parents' & Surgeons' Concerns
.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
All Concerns PresentingConcerns
FutureConcerns
AppearanceConcerns
Pain Concerns FunctionConcerns
PsychosocialConcerns
HealthConcerns
Mea
n In
dex
Scor
es
Child
Parent
Surgeon
Patient
vs Parent
- 16.21
p=0.000
- 11.89
p=0.001
-18.87
p=0.000
- 15.28
p=0.000
- 5.66
p=0.068
- 12.38
p=0.001
- 20.65
p=0.000
- 21.64
p=0.000
MeanDiff Sig. (2-tailed)
Patient vs
Surgeon
34.38
p=0.000
31.14
p=0.000
36.38
p=0.000
34.07
p=0.000
46.07
p=0.000
41.25
p=0.000
20.72
p=0.000
41.09
p=0.000
MeanDiff Sig. (2-tailed)
Parent vs
Surgeon
48.73
p=0.000
41.23
p=0.000
53.35
p=0.000
48.43
p=0.000
50.23
p=0.000
51.60
p=0.000
39.59
p=0.000
60.17
p=0.000
MeanDiff Sig. (2-tailed)
Figure 6.3 The mean index of concerns with 95% confidence intervals, overall and for each of the 5 domains are depicted for patients, their parents and their surgeons (HSC). The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
Hypothesis 1: Patients’ (pre-treatment) concerns about scoliosis are different from their
Parents’ concerns about scoliosis. (See Table 6.4 & Figure 6.3)
Parents were consistently more concerned than their children across all domains.
These differences were all statistically significant (p < 0.001), with the exception of the
pain domain (p = 0.068). The parents’ concerns for their children’s back pain at the time,
was not significantly different from their child’s concerns for back pain at the time.
92
However, parents had significantly higher concerns than their children, regarding the risk
for future back pain (p< 0.001).
Hypothesis 2: Patients’ and Parents’ (pre-treatment) concerns about scoliosis are
different from Surgeons’ concerns. (See Table 6.4 & Figure 6.3)
Patients’, and their Parents’ concerns were compared with the concerns of their
respective Surgeon (one of four surgeons at The Hospital for Sick Children) using the
appropriate gendered (daughter or son) responses of the surgeon. This matched
comparison used a repeated measures analysis of variance and paired t-tests.
Therefore, the same surgeon’s responses was matched to more than one pair of
patients and parents, i.e., to every patient that they treated. Additionally, analysis of
variance (ANOVA) and Student t-tests were used to compare the means scores of the
various indices of concerns of patients and parents with all Canadian surgeons’
concerns.
Parents and children were consistently more concerned about all aspects of scoliosis
than their surgeons (all comparisons had p values < 0.001). See Figure 6.3.
Hypothesis 3: Patients’ (pre-treatment) concerns about scoliosis are different from their
Parents’ perception of their child’s concerns. (See Table 6.4 & Figure 6.4)
Patients were matched with their parents. Repeated measures analysis of variance and
paired t- tests were used to compare mean scores of (i) Patients, (ii) Parents, and (iii)
Parents’ perception of their child’s concerns.
93
Parents’ perception of their children’s concerns, were remarkably similar to their
children’s actual concerns. The mean differences were all clinically and statistically
insignificant.
Patients' Concerns versus Parents' Perception of Child's Concerns
.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
All Concerns PresentingConcerns
FutureConcerns
AppearanceConcerns
PainConcerns
FunctionConcerns
PsychosocialConcerns
HealthConcerns
Mea
n In
dex
PatientParent-Child
Patients’
vs Parents’
perception of child
-1.08
0.75
-3.63
0.325
0.49
0.89
-5.66
0.155
3.52
0.363
-0.15
0.966
-4.2
0.321
2.075
0.620
Mean Diff.
Sig (2-tailed)
Figure 6.4 The mean index of concerns with 95% confidence intervals for All, Presenting, Future concerns, & for each of the 5 domains are depicted for Patients’ and Parent’s perception of their child’s concerns. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
94
6.2 Concerns Regarding Surgery for Scoliosis (Undesirable & Adverse Events)
Aim 2 of the thesis was to describe and compare Patients’, Parents’ and Parents’
perception of their child’s concerns (worries) regarding surgery for correction of scoliosis.
Concerns about undesirable outcomes or adverse events that might arise from surgery
were rated on 6-point ordinal rating scale from “Not at all concerned” (0) to “Extremely
concerned” (5) for each of these events. The events were categorized as short-term
problems (11 items) or long-term adverse outcomes (13 items) occurring or lasting
beyond one year after surgery. Means and standard deviations of concerns (prior to
surgery) were determined for (i) Patients, (ii) Parents and (iii) Parents’ perception of their
child’s concerns regarding surgery for scoliosis (See Table 5.). Repeated measures
analysis of variance and paired t-tests were used to compare mean scores of (i)
Patients, (ii) Parents, and (iii) Parents’ perception of their child’s concerns.
(See Tables 6.5, 6.6, 6.7 & 6.8; Figures 6.5, 6.6, 6.7, & 6.8)
6.2.1 Patients’ Concerns Regarding Surgery for Scoliosis
Patients reported a wide range in their overall level of prior concerns about surgery for
scoliosis. The magnitude of overall concern as measured by the mean Index of All
Concerns was 51.94 (SD: 22.12). Patients’ level of concern for short-term problems, as
measured by the Index of Concerns for Short-Term Undesirable Events (52.63;
SD:22.14) was similar to their level of concern for long-term adverse outcomes as
measured by the Index of Concerns for Long-Term Undesirable Events (51.36;
SD:24.91). (See Table 6.7)
Analyzed by individual items, patients reported a wide range of concerns, from “not at all
concerned” to “extremely concerned” (0 – 5) for all short and long-term undesirable
events. Patients’ greatest short-term concerns related to their fear of pain after surgery
95
with 35 of 55 patients reporting that prior to surgery they had been “very concerned” or
“extremely concerned” about this. 30 patients reported that they had been “very
concerned” or “extremely concerned” about the possibility of an unpleasant scar. About
half the patients were “very concerned” or “extremely concerned” about the risk of
experiencing back stiffness and a restriction of physical activities both in the short and
long-term, and the risk of hardware related problems in the future. 23 of 55 patients had
been “very concerned” or “extremely concerned” about the risk of paralysis. A similar
number of patients were concerned about the possibility of an unsatisfactory correction
of their deformity and the need for additional surgery in the future. (See Table 6.5)
Table 6.5 Patients’ Concerns Regarding Surgery (Ranked in descending order)
Short-Term Undesirable Events
Mean (Std. Dev.)
Range
# of Ratings of ‘4’ or ‘5’ (%)
i. Pain after surgery 3.75 (1.24) 0 - 5 35 (64%) ii. Unpleasant scar 3.44 (1.49) 0 – 5 30 (55%) iii. Restricted physical activities 3.20 (1.22) 0 – 5 23 (42% iv. Back stiffness 3.15 (1.31) 0 – 5 23 (42%) v. Paralysis (temporary) 2.73 (1.80) 0 – 5 23 (42%) vi. Infection (early) 2.45 (1.62) 0 – 5 15 (27%) vii. Sensory changes or muscle weakness 2.44 (1.50) 0 – 5 13 (24%) viii. Death 2.33 (2.01) 0 – 5 17 (31%) ix. Risks of blood transfusion 1.93 (1.61) 0 – 5 12 (22%) x. Abdominal pain, nausea & vomiting 1.78 (1.45) 0 – 5 8 (15%) xi. Loss of privacy & independence 1.76 (1.39) 0 - 5 7 (13%)
Long-Term Undesirable Events
Mean (Std.Dev.)
Range
# of Ratings of ‘4’ or ‘5’
i. Unpleasant scar 3.15 (1.63) 0 - 5 25 (47%) ii. Rods/hooks causing problems 3.07 (1.53) 0 – 5 24 (44%) iii. Back stiffness (lacking flexibility) 3.04 (1.37) 0 – 5 22 (40%) iv. Restricted physical activities 2.93 (1.24) 0 – 5 18 (33%) v. Partial/unsatisfactory correction 2.85 (1.53) 0 – 5 20 (37%) vi. Need for another operation 2.84 (1.85) 0 – 5 22 (40%) vii. Back pain in the future 2.78 (1.46) 0 – 5 17 (31%) viii. Spine does not fuse properly 2.69 (1.65) 0 – 5 19 (35%) ix. Deformity might recur or worsen 2.45 (1,77) 0 – 5 20 (37%) x. Paralysis (permanent) 2.31 (1.97) 0 – 5 20 (37%) xi. Sensory loss or muscle weakness (perm) 2.07 (1.60) 0 - 5 13 (24%) xii. Infection (late) 1.75 (.152) 0 – 5 11 (20%) xiii. Late risks of blood transfusion 1.56 (1.68) 0 - 5 9 (16%)
96
6.2.2 Parents’ Concerns Regarding Surgery for Scoliosis
Parents also reported a wide range in their overall level of concern about their child’s
scoliosis prior to surgery. In general, parents had greater concerns, with a larger
number of parents expressing a greater number of more serious concerns. The
magnitude of overall concern as measured by the mean Index of All Concerns was
64.81 (SD:21.02). Parents’ level of concern for short-term problems, as measured by
the Index of Concerns for Short-Term Undesirable Events (69.78; SD:19.92) was
somewhat higher than their level of concern for long-term adverse outcomes as
measured by the Index of Concerns for Long-Term Undesirable Events (60.1;
SD:24.28). (See Table 6.7)
Analyzed by item, parents reported the full range of concerns (0 – 5) for all except for
two items, post-operative pain and unpleasant scarring, respectively. More than half of
the parents reported that prior to surgery they had been “extremely concerned” or “very
concerned” about the post-operative pain that their child would experience, the risk of
back stiffness, risk of paralysis, an unpleasant scar, hardware problems, risk of future
back pain, the risk of death, restricted physical activities, and risk of post-operative
infection. (See Table 6.6)
97
Table 6.6 Parents’ Concerns Regarding Surgery (Ranked in descending order) Short-Term
Undesirable Events Mean
(Std. Dev.)
Range# of Ratings of
‘4’ or ‘5’ (%) i. Pain after surgery 4.45 (0.67) 3 – 5 48 (91%) ii. Back stiffness 3.98 (1.07) 1 - 5 39 (74%) iii. Paralysis (temporary) 3.91 (1.48) 0 - 5 35 (66%) iv. Unpleasant scar 3.81 (1.14) 1 - 5 34 (64%) v. Death 3.60 (1.62) 0 - 5 30 (57%) vi. Restricted physical activities 3.57 (1.15) 0 – 5 29 (55%) vii. Infection (early) 3.45 (1.51) 0 – 5 29 (55%) viii. Sensory changes or muscle weakness 3.23 (1.38) 0 – 5 25 (47%) ix. Risks of blood transfusion 2.94 (1.91) 0 – 5 25 (47%) x. Loss of privacy & independence 2.75 (1.67) 0 – 5 19 (36%) xi. Abdominal pain, nausea & vomiting 2.73 (1.65) 0 – 5 21 (40%)
Long-Term Undesirable Events
Mean (Std.Dev.)
Range
# of Ratings of ‘4’ or ‘5’ (%)
i. Rods/hooks causing problems 3.57 (1.56) 0 - 5 32 (60%) ii. Back pain in the future 3.55 (1.31) 0 – 5 31 (58%) iii. Partial/unsatisfactory correction 3.28 (1.41) 0 – 5 25 (47%) iv. Back stiffness (lacking flexibility) 3.28 (1.25) 0 – 5 24 (45%) v. Unpleasant scar 3.11 (1.40) 0 – 5 21 (40%) vi. Spine does not fuse properly 3.06 (1.63) 0 – 5 26 (49%) vii. Need for another operation 3.06 (1.78) 0 – 5 23 (43%) viii. Paralysis (permanent) 3.04 (2.05) 0 – 5 29 (55%) ix. Deformity might recur or worsen 3.00 (1.61) 0 – 5 24 (45%) x. Restricted physical activities 2.96 (1.32) 0 – 5 18 (34%) xi. Sensory loss or muscle weakness (perm) 2.77 (1.79) 0 – 5 20 (38%) xii. Infection (late) 2.58 (1.73) 0 – 5 19 (36%) xiii. Late risks of blood transfusion 2.13 (1.94) 0 – 5 16 (30%)
6.2.3 Parents’ Perception of their Child’s Concerns Regarding Surgery
Parents also rated what they thought their child’s level of concern for each of the items
would be, blinded to their child’s responses. Based on their perception of their children’s
responses, the magnitude of overall concern was 49.73 (SD:25.88). Parents’ perception
of their children’s level of concern for short-term problems was 55.91 (SD:24.47), which
was somewhat higher than their perception of their children’s level of concern for long-
term adverse outcomes, 47.35 (SD:26.63). Parents’ perceptions of their children’s
individual concerns are compared to the patients’ responses in Section 6.2.4.
98
6.2.4 Comparison of Patients’, Parents’ and Parents’ Perception of their
Children’s Concerns Regarding Surgery for Scoliosis
Hypothesis 4: Patients’ (pre-treatment) concerns about surgery for scoliosis are
different from their Parents’ (pre-treatment) concerns about surgery for scoliosis.
Overall, parents were more concerned than children about all risks of surgery, including
short-term risks and long-term risks of undesirable outcomes.
(See Table 6.7)
Table 6.7 Patients’ vs Parents’ Overall Concerns Regarding Surgery for Scoliosis Index of Concerns Patients’
Concerns (n=55)
Parents’ Concerns (n = 53)
Mean Difference (p – value)
(n = 53) All
Undesirable Events
51.94 (22.12)
0 – 89.17
64.81 (21.03)
20.00 – 100
- 13.30
p = 0.001 Short Term Undesirable
Events
52.63 (22.14)
0 – 100
69.78 (19.92)
33.00 – 100
- 17.702
p=0.000 Long Term
Undesirable Events
51.35 (24.91)
0 – 95.38
60.61 (24.23)
8.00 – 100
- 9.579
p=0.023 Parents were consistently more concerned than their children about all short-term
adverse events following surgery. These differences were all significant (p ≤ 0.005),
except for concerns related to unpleasant scar (p = 0.084) and restricted activities
(0.064), for which children’s concerns approached that of their parents’. (See Figure 6.5)
99
Patients' vs Parents' Short Terms Concerns of Surgery
0.00
1.00
2.00
3.00
4.00
5.00
Pain
Scar
Stiff
ness
Res
tric
ted
Act
ivity
Early
Infe
ctio
n
Abd
o Pa
in &
Vom
iting
Loss
of
Inde
pend
ence
Blo
odTr
ansf
usio
n
Wea
knes
s or
Sens
ory
Loss
Tem
pora
ryPa
raly
sis
Dea
th
Mag
nitu
de o
f Con
cern
ChildParent
Patient
vs Parent
- 0.72
0.000
- 0.36
0.084
- 0.83
0.001
-0.42
0.064
- 1.02
0.001
-0.98
0.001
- 1.06
0.001
- 1.06
0.002
- 0.85 0.002
- 1.21 0.000
- 1.28 0.000
Mean Diff. Sig. (2-tailed)
Figure 6.5 Comparison of Patients’ with Parents’ short-term concerns regarding surgery for scoliosis. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
Parents were consistently more concerned than their children about all long-term
adverse events following surgery. However, these differences were smaller and only the
difference in concerns for late infection reached an adjusted (for multiple comparisons)
threshold of statistical significance (p<0.005). (See Figure 6.6)
100
Patients' vs Parents' Long-term Concerns of Surgery
0.00
1.00
2.00
3.00
4.00
5.00Fu
ture
Bac
k Pa
in
Scar
Poor
Cor
rect
ion
Bac
k St
iffne
ss
Res
tric
ted
Act
iviti
es
Late
Infe
ctio
n
Har
dwar
e Pr
oble
ms
Failu
re o
f Fus
ion
Rec
urre
nt D
efor
mity
Ris
ks o
f Tra
nsfu
sion
Perm
anen
t Sen
sory
Los
s
Perm
anen
t Par
alys
is
Reo
pera
tion
Mag
nitu
de o
f Con
cern
Child
Parent
Patient
vs Parent
- .77
0.008
-.05
0.82
-.43
0.1
-.26
0.3
- .06
0.8
-.87
0.003
- .52
0.08
-.37
0.23
- .57
0.07
- .6
0.06
- .72
0.02
-.77
0.02
-.23
0.48
Mean Diff.
Sig. (2-tailed)
Figure 6.6 Comparison of Patients’ with Parents’ long-term concerns regarding surgery for scoliosis.The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
101
Hypothesis 5: Patients’ (pre-treatment) concerns about surgery for scoliosis are
different from their Parents’ perception of their child’s (pre-treatment) concerns about
surgery for scoliosis. Patients were matched with their parents. Repeated measures
analysis of variance and paired t- tests were used to compare mean scores of (i)
Patients, (ii) Parents, and (iii) Parents’ perception of their child’s concerns.
Although parents were far more concerned than their children regarding the risks of
undesirable events following surgery, they reported that they believed that their children
had lower level of concerns than them. When compared with their children’s responses,
parents’ perceptions of their children’s concerns were similar to their children’s actual
concerns. Overall, the mean differences between patients’ and their parents’ perception
of their responses were small (clinically insignificant) and statistically insignificant.
(See Table 6.8)
Table 6.8 Patients’ Concerns vs Parents’ Perception of Child’s Concerns about Surgery Index of Concerns Patients’
Concerns (n=55)
Parents’ Perception of Child’s Concerns
(n = 53)
Mean Difference (p – value)
(n = 53) All
Undesirable Events
51.94 (22.12)
0 – 89.17
49.73 (25.88)
0 – 100
1.30
p=0.785 Short Term Undesirable
Events
52.63 (22.14)
0 – 100
55.91 (24.47)
7.27 - 100
- 5.49
p=0.207 Long Term
Undesirable Events
51.35 (24.91)
0 – 95.38
47.35 (26.63)
0 – 100
2.26
p=0.644
102
Among the concerns for short-term risks of undesirable events, parents were perceptive
of most of their children’s concerns. They only overestimated their children’s concerns
for post-operative pain, and loss of privacy and independence. (See Figure 6.7)
Patients' vs Parents' Perception of Child's Short Terms Concerns of Surgery
0.00
1.00
2.00
3.00
4.00
5.00
Pain
Scar
Stiff
ness
Res
tric
ted
Act
ivity
Early
Infe
ctio
n
Abd
o Pa
in &
Vom
iting
Loss
of
Inde
pend
ence
Blo
odTr
ansf
usio
n
Wea
knes
s or
Sens
ory
Loss
Tem
pora
ryPa
raly
sis
Dea
th
Mag
nitu
de o
f Con
cern
Child
Parent-Child
Patient
vs Parent- Child
- 0.5
0.013
- 0.38
0.063
- 0.08
0.75
-0.15
0.57
0.27
0.43
-0.29
0.35
- 0.77
0.02
- 0.29
0.38
- 0.19 0.54
- 0.38 0.31
- 0.27 0.47
Mean Diff. Sig. (2-tailed)
Figure 6.7 Comparison of Patients’ with Parents’ perceptions of their Children’s short-term concerns regarding surgery for scoliosis. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
103
Regarding concerns for long-term adverse effects or undesirable outcomes, parents’
perceptions of what their children’s concerns might be were also very similar to their
children’s responses, with no significant differences in the mean rating scores for any of
the items. (See Figure 6.8)
Long-term Concerns of SurgeryPatients' vs Parents' Perception of Child's Concerns
0.00
1.00
2.00
3.00
4.00
5.00
Futu
re B
ack
Pain
Scar
Poor
Cor
rect
ion
Bac
k St
iffne
ss
Res
tric
ted
Act
iviti
es
Late
Infe
ctio
n
Har
dwar
e Pr
oble
ms
Failu
re o
f Fus
ion
Rec
urre
nt D
efor
mity
Ris
ks o
f Tra
nsfu
sion
Perm
anen
t Sen
sory
Los
s
Perm
anen
t Par
alys
is
Reo
pera
tion
Mag
nitu
de o
f Con
cern
Child
Parent-Child
Patient vs
Parent- Child
-0.38
0.20
-0.02
0.93
-0.15
0.61
-0.15
0.63
-0.06
0.80
-0.10
0.75
-0.13
0.69
-0.47
0.17
-0.15
0.67
-0.21
0.5
-0.08
0.77
-0.04
0.91
-0.15
0.67
Mean Diff.
Sig. (2-tailed)
Figure 6.8 Comparison of Patients’ with Parents’ perceptions of their Children’s long-term concerns regarding surgery for scoliosis. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
104
6.3 Summary
In this chapter, we explored the concerns that patients and parents experience both
about the diagnosis of scoliosis and the surgical treatment for scoliosis. We compared
patients’ concerns with those of their parents as well as with surgeons who treat
scoliosis. We were also interested in determining whether parents were aware of their
child’s concerns.
Patients and their parents reported a wide range in their levels of concern for different
issues regarding scoliosis. A larger proportion of parents reported a greater number of
more serious concerns than their children overall about the diagnosis of scoliosis,
including their concerns for perceived consequences of scoliosis in the present and in
the future. Surgeons, when asked to assume the role of a parent of a child with
scoliosis, reported consistently fewer and far less serious concerns than either patients
or their parents in all domains. The effect of scoliosis on future physical appearance
was the highest concern expressed by all three groups. The risk of back pain was the
next highest concern for patients and their parents, while surgeons’ next highest
concerns related to psychosocial issues.
Parents also expressed a larger number of and more serious concerns than their
children about the risks of surgery for scoliosis. When asked to report what they
thought their children’s responses might be, parents seemed to recognize that their
children’s responses would be different from theirs, but they were also remarkably
perceptive of the direction as well as the magnitude of these differences.
105
Chapter 7 Desires (Wishes) And Goals Of Surgery
Aim 3 of this thesis was to describe and compare Patients’ and Parents’ desires
(wishes) of the surgical treatment of scoliosis and to describe Surgeons’ goals of surgery
for scoliosis. Desires were defined as wishes regarding medical care. In the context of
surgery for scoliosis, desires referred to the perception that a given event or outcome
was wanted or wished for by patients and their parents. Desires of patients (and
parents) corresponded to the Goals of treatment from the surgeons’ perspective.
The measurement of patients’ desires, parents’ desires and surgeons’ goals were
operationalized in two ways. First, the respondents (patients and their parents) were
asked to report how much he/she wished or desired that surgery would accomplish a
particular objective or goal, rated on a 6-point ordinal scale from “Not at all desired” (0)
to “Very strongly desired” (5). This provided an estimate of the strength or magnitude of
desire for each of the reasons for surgery. Second, patients’ and parents’ desires
(wishes) of surgery were measured by asking respondents to rank their top 10 wishes or
desires (from a list of 21 items) in order of “most to least important reason” for
undergoing surgery.
Surgeons were asked to report how often each item was a reason for recommending
surgery to their patients on a 7-point rating scale from “Never” (0) to “Always “(6). This
provided an estimate of the frequency of each individual item as an explicit goal of
surgery from each surgeon’s perspective. Surgeons were also asked to rank their goals
in order of “most to least important reason”.
106
7.1 Patients’ Desires (wishes) of Surgery for Scoliosis
Patients reported a wide range (0 – 5) in the strength of their desires for each of the
goals of surgery. The magnitude of the overall strength of desires as measured by the
Index of all Desires of Surgery (out of a maximum 100) was 46.72 (std.dev:18.97).
Patients’ desires (means; std. dev.) for immediate goals as measured by the Index of
Immediate Desires of Surgery (43.36; 19.39) were not significantly less than their
desires for longer term goals measured by the Index of Future Desires of Surgery
(48.78; 20.85). The strongest desire was by far in the domain pertaining to physical
appearance (80.73; 22.01). (See Figure 7.1)
Strength of Desires for Goals of Surgery
0.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
All G
oals
Pres
ent
Goa
ls
Futu
re G
oals
Appe
aran
ceG
oals
Pain
Goa
ls
Func
tiona
lG
oals
Psyc
hoso
cial
Goa
ls
Hea
lth G
oals
Mea
n In
dex
All PatientsGirlsBoys
Figure 7.1 Patients’ mean strength of desires overall & by domain, with std. deviations.
The boys in this cohort shared similar desires for goals as the girls, although the strength
of their desires was slightly higher for physical functional goals than girls.
Based on the strength of patients’ desires for each specific item/goal (means; std. dev.),
“prevent worsening of future physical appearance” (4.5; 1.08), “prevent future back pain”
107
(3.98; 1.35), “improve current physical appearance” (3.80; 1.38), “prevent future general
health problems” (3.33; 1.70), and “prevent restriction of future physical activities” (3.02;
1.56) were the five strongest rated desires of surgery in aggregate. (See Table 7.1)
This was corroborated by the order of ranking of the most important reasons (goals) for
surgery listed by patients. Overall, “prevent worsening of future physical appearance”
was ranked by patients as the most important reason for undergoing surgery, with 43 of
55 patients (78%) reporting this wish among their top 5 reasons. This was followed by
“improve current physical appearance” and “prevent future back pain” both ranked by 37
of 55 patients (67%) among their top five reasons. However, to “improve current
physical appearance” was ranked as the most important reason by the most number of
patients (17/55; 30%), followed by 8/55 (15%) ranking “prevent future lung and heart
problems” and 6/55 (11%) choosing “prevent worsening of future physical appearance”
as their number 1 reason for surgery. (See Table 7.2)
108
Table 7.1 Strength of Patients’ Desires for Goals of Surgery (ranked in descending order)
GOALS OF SURGERY
MEAN (SD) Range
# of Ratings of “4” or “5”* (%)
1. Prevent worsening of Future physical appearance
4.27 (1.08) 0 – 5 47 (85%)
2. Prevent future back pain 3.98 (1.35)
0 – 5 41 (75%) 3. Improve current physical
appearance 3.80 (1.38)
0 – 5 37 (67%) 4. Prevent future problems with
general health 3.33 (1.70)
0 – 5 33 (60%) 5. Prevent restriction of future
physical activities 3.02 (1.56)
0 – 5 24 (44%) 6. Prevent future lung/heart
problems 2.87 (1.92)
0 – 5 28 (51%) 7. Prevent restriction of future
sport/recreation 2.78 (1.62)
0 – 5 20 (36%)
8. Decrease current back pain 2.71 (2.00)
0 – 5 23 (42%) 9. Prevent loss of future self-
esteem 2.33 (1.89)
0 – 5 21 (38%)
10. Improve current self-esteem 2.29 (1.58)
0 – 5 15 (27%) 11. Improve current physical
activities 2.00 (1.58)
0 – 5 11 (20%) 12. Improve participation in current
sport/recreation 2.00 (1.56)
0 – 5 11 (20%)
13. Prevent early mortality 1.87 (1.91)
0 – 5 16 (29%)
14. Eliminate need to wear a brace 1.73 (2.29)
0 – 5 18 (33%) 15. Improve current emotional well-
being 1.72 (1.69)
0 – 5 10 (18%) 16. Prevent problems with
pregnancy or childbirth 1.64 (1.73)
0 – 5 9 (16%) 17. Prevent problems with future
emotional well-being 1.62 (1.64)
0 – 5 10 (18%) 18. Improve employment and
career prospects 1.56 (1.58)
0 – 5 7 (13%) 19. Prevent problems with future
relationships/marriage 1.35 (1.60)
0 – 5 7 (13%) 20. Improve current
friendships/relationships 1.13 (1.61)
0 – 5 7 (13%) 21. Prevent problems with sexual
function 1.09 (1.60)
0 – 5 8 (13%) * Number of patients (%) who “strongly desired” or “very strongly desired” this goal of surgery. Patients’ five strongest desires of surgery are in bold print.
109
Table 7.2 Patients’ Reasons for Surgery Ranked in Descending Order of Importance
REASONS FOR SURGERY
Mean * (SD)
Range*
# of times ranked 1
(10 points)(%)
# of times
ranked 2 (9 points)
(%)
# of times
ranked in top 3
goals (%)
# of times
ranked in top 5
goals (%)1. Prevent worsening of
future physical appearance7.11 (2.57)
0 -10 6 (11%) 15 (27%) 30 (55%) 43 (78%) 2. Improve current physical
appearance 6.69 (3.46)
0 – 10 17 (31%) 7 (13%) 29 (53%) 37 (67%)
3. Prevent future back pain 6.17 (2.93)
0 – 10 5 (9%) 6 (11%) 20 (36%) 37 (67%) 4. Prevent future lung/heart
problems 4.65 (3.93)
0 – 10 8 (15%) 6 (11%) 19 (35%) 23 (42%) 5. Prevent future general
health problems 4.31 (3.44)
0 – 10 3 7 (13%) 13 (24%) 21 (38%) 6. Decrease current back
pain 4.19 (3.98)
0 – 10 5 (9%) 6 (11%) 17 (31%) 24 (44%) 7. Prevent future restriction
of physical activities 3.31 (2.88)
0 -10 1 (2%) 0 3 (6%) 15 (27%) 8. Prevent future restriction
of participation in sport/recreation
2.57 (3.01) 0 – 10 1 (2%) 2 (4%) 3 (6%) 12 (22%)
9. Improve current self-esteem
2.52 (3.08) 0 – 9 0 1 (2%) 6 (11%) 13 (24%)
10. To eliminate need to wear a brace
2.46 (3.87) 0 -10 6 (11%) 1 (2%) 11 (20%) 15 (27%)
11. Prevent early mortality 1.5 (2.6)
0 -10 1 (2%) 0 3 (6%) 5 (9%) 12. Prevent loss of future self-
esteem 1.28 (2.33)
0 – 9 0 1 (2%) 2 (4%) 5 (9%) 13. Prevent problems with
pregnancy or childbirth 1.2 (2.12)
0 – 9 0 1 (2%) 1 (2%) 3 (6%) 14. To improve current
emotional well-being 1.13 (2.27)
0 -9 0 1 (2%) 2 (4%) 4 (7%) 15. Prevent problems with future
emotional well-being 1.07 (1.99)
0 – 8 0 0 1 (2%) 4 (7%) 16. Improve current physical
activities 0.85 (1.76)
0 – 8) 0 0 1 (2%) 1 (2%) 17. Improve current participation
in sport/recreation 0.85 (2.08)
0 – 10 1 (2%) 0 1 (2%) 3 (6%) 18. Prevent problems with future
relationships/marriage 0.52 (1.49)
0 – 7 0 0 0 1 (2%) 19. Improve employment and
career prospects 0.43 (1.02)
0 – 4 0 0 0 0 20. Improve current
friendships/relationships 0.35 (1.08)
0 – 5 0 0 0 0 21. Prevent problems with
sexual function 0.35 (1.36)
0 – 9 0 1 (2%) 1 (2%) 1 (2%) * Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 10 reasons are highlighted in bold print.
110
7.2 Parents’ Desires (wishes) of Surgery for Scoliosis
Parents reported a wide range (0 – 5) in the strength of their desires for all of the goals
of surgery except those pertaining to physical appearance (2 – 5). The magnitude of the
overall strength of desires as measured by the Index of all Desires of Surgery (out of a
maximum 100) was 64.91 (std. dev:17.02). Parents’ desires (means; std. dev.) for
immediate goals as measured by the Index of Immediate Desires of Surgery (57.64;
20.77) were significantly less stronger than their desires for longer term goals measured
by the Index of Future Desires of Surgery (69.38;18.43). Parents expressed strong
desires for goals in all domains but the strongest desire was in the domain pertaining to
physical appearance (88.30;12.82). (See Figure 7.2)
Parents' Strength of Desires for Goals of Surgery
0
10
20
30
40
50
60
70
80
90
100
All G
oals
Pres
ent
Goa
ls
Futu
re G
oals
Appe
aran
ceG
oals
Pain
Goa
ls
Func
tiona
lG
oals
Psyc
hoso
cial
Goa
ls
Hea
lth G
oals
Mea
n In
dex
All ParentsGirls' ParentsBoys' parents
Figure 7.2 Parents’ mean strength of desires overall & by domain, with std. deviations.
111
Parents of girls and boys had equally strong desires for goals in the physical appearance
and psychosocial domains. Parents of girls had slightly stronger desires for goals of
surgery in the other domains than did parents of boys.
Based on the strength of parents’ desires for each goal (means; std. dev.), “prevent
worsening of future physical appearance” (4.6; 0.60), “prevent future general health
problems” (4.38; 1.02), “prevent future lung and heart problems” (4.28; 1.31), “prevent
future back pain” (4.25; 1.22), “improve current physical appearance” (4.23; 0.82), were
the five strongest rated desires of surgery in aggregate. Parents reported a larger
number of stronger desires (wishes) from the list of goals of surgery. (See Table 7.3)
This was corroborated by the order of ranking of the most important reasons (goals) for
surgery listed by parents. Based on ranking of the most important reasons (goals) for
surgery, the five most important reasons picked by parents were the same as the top
five most important reasons for surgery reported by patients. Overall, “prevent
worsening of future physical appearance” was ranked by parents as the most important
reason for undergoing surgery, with 42 of 51 parents (82%) reporting this desire among
their top 5 reasons. This was followed by “prevent future lung and heart problems” and
“improve current physical appearance” both ranked by 35 of 51 parents (67%), “prevent
future back pain” ranked by 32 of 51 parents (63%) and “prevent future general health
problems” by 28 of 51 parents (55%), as one of their top five reasons for surgery. (See
Table 7.4)
112
Table 7.3 Strength of Parents’ Desires for Goals of Surgery (ranked in descending order) GOALS OF SURGERY
MEAN (SD) Range
# of Ratings of “4” or “5”* (%)
1. Prevent worsening of future physical appearance
4.60 (0.60) 2 – 5 52 (98%)
2. Prevent future general health problems
4.38 (1.02) 0 – 5 45 (85%)
3. Prevent future lung/heart problems
4.28 (1.31) 0 – 5 44 (83%)
4. Prevent future back pain 4.25 (1.22)
0 -5 45 (85%) 5. Improve current physical
appearance 4.23 (0.82)
2 – 5 42 (79%) 6. Prevent loss of future self-
esteem 3.83 (1.46)
0 – 5 37 (70%) 7. Prevent future restriction of
physical activities 3.74 (1.23)
0 – 5 34 (64%) 8. Prevent problems with future
emotional well-being 3.47 (1.65)
0 -5 29 (55%) 9. Prevent future restriction of
participation in sport/recreation 3.40 (1.23)
0 – 5 25 (47%)
10. Improve current self-esteem 3.23 (1.72)
0 – 5 27 (51%) 11. To improve current emotional
well-being 3.17 (1.68)
0 – 5 27 (51%)
12. Prevent early mortality 3.13 (2.04)
0 – 5 26 (49%) 13. To eliminate need to wear a
brace 3.06 (2.16)
0 – 5 32 (60%)
14. Decrease current back pain 2.85 (2.07)
0 – 5 27 (51%) 15. Prevent problems with
pregnancy or childbirth 2.74 (1.86)
0 – 5 26 (49%) 16. Prevent problems with future
relationships/marriage 2.57 (1.86)
0 – 5 21 (40%) 17. Improve employment and
career prospects 2.52 (1.79)
0 – 5 16 (30%) 18. Improve current physical
activities 2.49 (1.79)
0 - 5 20 (38%) 19. Improve current participation in
sport/recreation 2.43 (1.53)
0 – 5 13 (25%) 20. Prevent problems with sexual
function 2.30 (1.95)
0 – 5 19 (36%) 21. Improve current
friendships/relationships 1.60 (1.63)
0 – 5 10 (19%) * Number of parents (%) who “strongly desired” or “very strongly desired” this goal of surgery. Parents’ five strongest desires of surgery are in bold print.
113
Table 7.4 Parents’ Reasons for Surgery Ranked in Descending Order of Importance
REASONS FOR SURGERY
Mean * (SD)
Range*
# of times ranked 1
(10 points) (%)
# of times ranked 2 (9 points)
(%)
# of times ranked in
top 3 goals (%)
# of times ranked in
top 5 goals (%)
1. Prevent worsening of future physical appearance
7.65 (2.30) 0 – 10 12 (24%) 12 (24%) 31 (61%) 42 (82%)
2. Prevent future lung/heart problems
6.55 (3.71) 0 – 10 12 (24%) 13 (25%) 30 (59%) 35 (67%)
3. Improve current physical appearance
6.37 (3.14) 0 – 10 9 (18%) 5 (10%) 25 (25%) 35 (67%)
4. Prevent future back pain 5.76 (3.30)
0 – 10 7 (14%) 7 (14%) 16 (31%) 32 (63%) 5. Prevent future general
health problems 5.20 (3.66)
0 – 10 5 (10%) 7 (14%) 21 (41%) 28 (55%)
6. Prevent early mortality 3.02 (4.16)
0 – 10 9 (18%) 1 (2%) 13 (25%) 15 (29%) 7. Prevent future restriction
of physical activities 2.98 (2.65)
0 – 8 0 0 3 (6%) 11 (22%)
8. Decrease current back pain 2.80 (3.55)
0 – 10 3 (6%) 1 (2%) 9 (18%) 13 (25%) 9. Prevent problems with
future emotional well-being 2.45 (2.50)
0 – 8 0 0 1 (2%) 8 (16%) 10. Improve current self-
esteem 2.06 (2.95)
0 – 8 0 0 3 (6%) 11 (22%) 11. Prevent loss of future self-
esteem 1.90 (2.15)
0 – 8 0 0 1 (2%) 3 (6%) 12. Prevent problems with
pregnancy or childbirth 1.75 (2.51)
0 – 7 0 0 0 5 (10%) 13. To improve current emotional
well-being 1.59 (2.33)
0 – 7 0 0 0 7 (14%) 14. To eliminate need to wear a
brace 1.37 (2.46)
0 – 9 0 2 (4%) 2 (4%) 5 (10%) 15. Prevent future restriction of
participation in sport/recreation
1.04 (1.74) 0 – 8 0 0 1 (2%) 1 (2%)
16. Prevent problems with future relationships/marriage
0.86 (1.71) 0 – 7 0 0 0 2 (4%)
17. Improve current physical activities
0.55 (1.57) 0 – 8 0 0 1 (2%) 2 (4%)
18. Improve employment and career prospects
0.37 (1.23) 0 – 7 0 0 0 1 (2%)
19. Improve current friendships/relationships
0.35 (1.13) 0 – 6 0 0 0 1 (2%)
20. Prevent problems with sexual function
0.25 (0.98) 0 – 5 0 0 0 0
21. Improve current participation in sport/recreation
0.22 (0.83) 0 – 4 0 0 0 0
* Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 10 reasons are highlighted in bold print.
114
7.3 Parents’ Perception of their Children’s Desires of Surgery for Scoliosis
Parents believe that their children express a wide range (0 – 5) in the strength of their
desires for each of the goals of surgery. Based on parents’ perceptions of their
children’s strength of desires for each goal (means; std. dev.), “prevent worsening of
future physical appearance” (4.6; 0.82), “improve current physical appearance” (4.37;
1.01), “prevent future back pain” (4.02; 1.42), “prevent future general health problems”
(3.63; 1.73), and “prevent future restriction of physical activities” (3.60; 1.33) were the
five strongest rated desires of surgery in aggregate. (See Table 7.5)
Based on ranking of the most important reasons (goals) for surgery, the top five reasons
that parents believe that their children would have picked were “prevent worsening of
future physical appearance”, which was ranked as the most important reason that their
children would report for undergoing surgery, with 42 of 49 parents (86%) reporting this
goal among their children’s top 5 reasons. This was followed by “improve current
physical appearance” ranked by 37 of 49 parents (76%), “prevent future back pain”
ranked by 22 of 49 parents (45%), “prevent future general health problems” and “prevent
future lung/heart problems” both ranked by 19 of 49 parents (39%) among their
children’s top five reasons. Like patients, the single largest number of parents reported
that the goal of “improve current physical appearance” would be their children’s most
important reason for surgery (18 of 49; 37%), followed by 10 parents (20%) who felt that
“prevent worsening of future physical appearance” would be their children’s number one
reason for surgery. (See Table 7.6)
115
Table 7.5 Parents’ perceptions of their Children’s Desires of Surgery (ranked in descending order)
GOALS OF SURGERY
MEAN (SD) Range
# of Ratings of “4” or “5”* (%)
1. Prevent worsening of future physical appearance
4.60 (0.82) 1 – 5 48 (91%)
2. Improve current physical appearance
4.37 (1.01) 1 – 5 44 (83%)
3. Prevent future back pain 4.02 (1.42)
0 – 5 39 (74%) 4. Prevent future general health
problems 3.63 (1.73)
0 – 5 36 (68%) 5. Prevent future restriction of
physical activities 3.60 (1.33)
0 – 5 29 (55%) 6. Prevent future restriction of
participation in sport/recreation 3.58 (1.38)
0 – 5 28 (53%) 7. Prevent future lung/heart
problems 3.37 (1.86)
0 – 5 31 (58%) 8. To eliminate need to wear a
brace 3.12 (2.25)
0 – 5 33 (62%)
9. Improve current self-esteem 3.06 (1.92)
0 – 5 28 (53%)
10. Decrease current back pain 3.02 (2.06)
0 – 5 27 (51%) 11. Prevent loss of future self-
esteem 2.96 (1.91)
0 – 5 25 (47%) 12. Prevent problems with future
emotional well-being 2.71 (1.96)
0 – 5 22 (42%) 13. To improve current emotional
well-being 2.69 (1.90)
0 – 5 22 (42%)
14. Prevent early mortality 2.67 (2.15)
0 – 5 24 (45%) 15. Improve current physical
activities 2.62 (1.68)
0 – 5 16 (30%) 16. Improve current participation in
sport/recreation 2.62 (1.75)
0 – 5 18 (34%) 17. Prevent problems with
pregnancy or childbirth 2.29 (1.99)
0 – 5 16 (30%) 18. Improve employment and
career prospects 2.25 (2.08)
0 – 5 16 (30%) 19. Prevent problems with future
relationships/marriage 2.02 (1.86)
0 – 5 13 (25%) 20. Prevent problems with sexual
function 1.96 (2.02)
0 – 5 15 (28%) 21. Improve current
friendships/relationships 1.67 (1.64)
0 - 5 10 (19%) * Number of parents (%) who believed their children “strongly desired” or “very strongly desired” this goal of surgery. Parents’ perception of their children’s five strongest desires of surgery are in bold print.
116
Table 7.6 Parents’ Perception of their Children’s Reasons for Surgery Ranked in Descending Order of Importance
REASONS FOR SURGERY
Mean* (SD)
Range*
# of times ranked 1
(10 points)(%)
# of times ranked 2 (9 points)
(%)
# of times ranked in
top 3 goals (%)
# of times ranked in
top 5 goals (%)
1. Prevent worsening of future physical appearance
7.76 (2.44) 0 - 10 10 (20%) 15 (31%) 34 (69%) 42 (86%)
2. Improve current physical appearance
7.59 (3.03) 0 – 10 18 (37%) 9 (18%) 34 (69%) 37 (76%)
3. Prevent future back pain 4.47 (3.40)
0 – 10 2 (4%) 5 (10%) 12 (24%) 22 (45%) 4. Prevent future general
health problems 4.00 (3.56)
0 – 10 4 (8%) 2 (4%) 11 (22%) 19 (39%) 5. Prevent future lung/heart
problems 3.84 (3.64)
0 – 10 3 (6%) 4 (8%) 10 (20%) 19 (39%)
6. Decrease current back pain 3.47 (3.83)
0 – 10 3 (6%) 3 (6%) 12 (24%) 19 (39%) 7. To eliminate need to wear a
brace 3.12 (3.75)
0 – 10 5 (10%) 2 (4%) 9 (18%) 14 (29%) 8. Prevent future restriction
of physical activities 3.02 (2.52)
0 – 9 0 1 (2%) 2 (4%) 11 (22%) 9. Improve current self-
esteem 2.14 (2.70)
0 – 8 0 0 2 (4%) 8 (16%)
10. Prevent early mortality 2.14 (3.63)
0 – 10 4 (8%) 2 (4%) 9 (18%) 10 (20%) 11. Prevent future restriction of
participation in sport/recreation
1.71 (2.59) 0 – 8 0 0 3 (6%) 7 (14%)
12. Prevent loss of future self-esteem
1.67 (2.05) 0 – 7 0 0 0 3 (6%)
13. Improve current physical activities
1.63 (2.63) 0 – 9 0 1 (2%) 2 (4%) 6 (12%)
14. Prevent problems with future relationships/marriage
1.61 (2.56) 0 – 10 1 (2%) 0 1 (2%) 6 (12%)
15. To improve current emotional well-being
1.47 (2.34) 0 – 7 0 0 0 5 (10%)
16. Prevent problems with future emotional well-being
1.31 (2.00) 0 – 8 0 0 1 (2%) 2 (4%)
17. Prevent problems with pregnancy or childbirth
1.29 (2.28) 0 – 7 0 0 0 5 (10%)
18. Improve employment and career prospects
1.06 (2.50) 0 – 10 2 (4%) 0 2 (4%) 4 (8%)
19. Improve current participation in sport/recreation
0.78 (1.97) 0 – 10 1 (2%) 0 1 (2%) 2 (4%)
20. Improve current friendships/relationships
0.73 (1.99) 0 – 9 0 1 (2%) 2 (4%) 3 (6%)
21. Prevent problems with sexual function
0.33 (1.16) 0 – 6 0 0 0 1 (2%)
* Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 10 reasons are highlighted in bold print.
117
7.4 Comparison of Patients’ and Parents’ Desires of Surgery for Scoliosis
Repeated measures ANOVA and paired T-tests were used to make the respective
comparisons.
Table 7.7 Patients’ & Parents’ Desires of Surgery: means (std. dev) & ranges
Patients’
Desires
Parents’
Desires
Parents’ perception of
their Children’s Desires
Index of All Desires
(goals) of Surgery
46.72 (18.97)
2.86 – 94.29
64.91 (17.02)
28.57 - 97.14
59.78 (20.94)
11.43 - 99.05
Index of Immediate Desires (goals) of Surgery
43.36 (19.39)
0 – 90.00
57.64 (20.77)
15.00 – 95
57.88 (22.74)
5 – 97.5
Index of Future Desires
(goals) of Surgery
48.78 (20.85)
4.62 – 96.92
69.38 (18.43)
26.15 – 100
60.95 (23.05)
10.77 – 100
Appearance
Desires (goals)
80.73 (22.01)
0 - 100
88.30 (12.82)
40.00 - 100
89.62 (17.49)
20 - 100
Pain (relief)
Desires (goals)
56.12 (24.43)
0 - 100
67.67 (26.19)
0 - 100
67.69 (28.05)
0 – 100
Physical Functional
Desires (goals)
45.45 (25.70)
0 – 100
58.11 (21.92)
0 - 100
58.62 (23.52)
8 – 100
Psychosocial
Desires (goals)
32.83 (26.85)
0 - 100
57.63 (25.13)
0 – 100
48.68 (31.43)
0 – 100
Health
Desires (goals)
48.55(28.59)
0 - 100
72.36 (21.96)
10 - 100
59.81 (31.06)
0 – 95.00
118
Hypothesis 6: Patients’ (pre-treatment) desires are different from their Parents’ (pre-
treatment) desires of surgery for scoliosis. (See Table 7.7 & Figure 7.3)
Strength of Desires for Goals of Surgery Patients' vs Parents' Desires
0.00
10.0020.00
30.0040.00
50.00
60.0070.00
80.0090.00
100.00
All
Goa
ls
Pres
ent
Goa
ls
Futu
re G
oals
App
eara
nce
Goa
ls
Pain
Goa
ls
Func
tiona
lG
oals
Psyc
hoso
cial
Goa
ls
Hea
lth G
oals
Mea
n In
dex
PatientsParents
Patient
Vs Parent
- 17.30
p=0.000
- 13.49
p=0.000
-19.65
p=0.000
- 7.55
p=0.02
- 9.81
p=0.02
- 12.23
p=0.01
- 24.26
p=0.000
- 21.98
p=0.000
Mean Diff. Sig. (2-tailed)
Figure 7.3 The mean index of the strength of desires with 95% confidence intervals, overall and for each of the domains are depicted for patients and their parents. The mean differences for the paired comparisons are provided along with the 2-tailed significance level.
Parents expressed similar sets of desires or wishes as their children, with the five most
important reasons picked by parents being the same as the top five most important
reasons for surgery reported by patients. However, the strength of parents’ desires for
these goals was significantly greater than the strength of their children’s across all goal
domains. This was in keeping with the finding of parents’ greater concerns about
scoliosis than their children.
119
Hypothesis 7: Patients’ (pre-treatment) desires are different from their Parents’ perception of
their child’s (pre-treatment) desires of surgery for scoliosis. (See Table 7.7 & Figure 7.4)
Strength of Desires for Goals of Surgery Patients' vs Parents' Perception of Children's Desires
0.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
All G
oals
Pre
sent
Goa
ls
Futu
re G
oals
App
eara
nce
Goa
ls
Pain
Goa
ls
Func
tiona
lG
oals
Psy
chos
ocia
lG
oals
Heal
th G
oals
Mea
n In
dex
PatientsParent-Child
Patients’
vs Parents’
perception of child
-1.08
0.75
-3.63
0.325
0.49
0.89
-5.66
0.155
3.52
0.363
-0.15
0.966
-4.2
0.321
2.075
0.620
Mean Diff.
Sig (2-tailed)
Figure 7.4 The mean index of the strength of desires with 95% confidence intervals, overall and for each of the domains are depicted for Patients’ and Parent’s perception of their children’s desires. The mean differences for the paired comparisons are provided along with the significance (2-tailed) level.
Parents’ perception of their children’s desires was similar to the desires of surgery reported by
their children. Parents recognized what domains their children would report as well as the
strength of these desires. The mean differences between the strength of the parents’
perception of their children’s desires of surgery and actual strength of desires of surgery
reported by their children were all clinically and statistically insignificant.
120
7.5 Surgeons’ Goals of Surgery for Scoliosis
Surgeons’ goals of treatment were measured in two ways. First, surgeons were asked
to report how often each item was a reason for recommending surgery for their typical
patients with adolescent idiopathic scoliosis who met the surgeon’s indications for
surgery on a 7-point ordinal rating scale (0 - “never”; 1 - “very rarely”; 2 - “rarely”; 3 -
“sometimes”; 4 - “often; 5 - “very often”; and 6 - “always”). This provided an estimate of
the frequency of each individual item as an explicit goal of surgery from each surgeon’s
perspective. Second, surgeons were asked to rank these goals in order of descending
importance (“most to least important reason”).
The most frequently cited goals of surgery are in the physical appearance domain with a
mean frequency index (out of a maximum 100) of 69.05; std. dev. 14.23. Surgeons at
the Hospital for Sick Children were not significantly different from all other Canadian
surgeons. (See Figure 7.5)
Surgeons' Goals of Surgery
0
10
20
30
40
50
60
70
80
90
100
All
Goa
ls
Pre
sent
Goa
ls
Futu
re G
oals
App
eara
nce
Goa
ls
Pai
n G
oals
Func
tiona
lG
oals
Psy
chos
ocia
lG
oals
Hea
lth G
oals
Mea
n In
dex
of F
requ
ency
All SurgeonsHSC Surgeons
Figure 7.5 Surgeons’ mean frequency of goals overall and by domain, with 95% confidence intervals.
121
Based on the frequency of recommendation for specific goals/items, the five most
frequently cited goals (means; std. dev.) of surgery were “prevent worsening of future
physical appearance” (5.0; 1.06), “improve current physical appearance” (4.67; 1.05),
“improve current self-esteem” (3.25; 1.19), “improve current emotional well-being” (3.0;
1.35), and “prevent loss of future self-esteem” (2.96; 1.3). Surgeons, however, do have
a wide range in the frequency with which they cite specific goals as indications for
surgery in their patients. With the exception of the two items pertaining to physical
appearance, the range in the frequency with which these goals were reported by
surgeons was from 0 to 5. In aggregate, all other items were reported “rarely” to “never”
as goals of surgery. Nonetheless, between 20% and 30% of all surgeons surveyed
reported “prevent future lung/heart problems”, “prevent problems with future emotional
well-being”, “prevent future general health problems”, “prevent future back pain”, and “to
eliminate need to wear a brace” as goals at least “often” for their patients. (See Table
7.8)
Based on their ranking of the most important goals for surgery, the top four goals picked
by all surgeons surveyed were among the top five most important desires of surgery
reported by patients and parents. Overall, “prevent worsening of future physical
appearance” was ranked by surgeons as the most important reason for undergoing
surgery, followed by “improve current physical appearance”, with 22 of 24 surgeons
(92%) and 20/24 surgeons (83%) respectively reporting these two items among their top
5 most important goals. This was followed by “prevent future lung and heart problems”
ranked by 11/24 surgeons (46%), “prevent future back pain” ranked by 9/24 surgeons
(38%) and “to improve current emotional well-being ranked by 7/24 surgeons (29%) as
one of their top five reasons for surgery. Between 25% and 33% of surgeons also
reported “prevent future general health problems”, “prevent problems with future
122
emotional well-being”, “improve current self-esteem” among their top five most important
goals of surgery. (See Table 7.9)
Surgeons from the Hospital for Sick Children reported similar importance rankings as
other Canadian surgeons, but unlike their counterparts, did not rank “prevent future back
pain” as an important goal for surgery. Instead they prioritized “prevent future emotional
problems” along with “improve current emotional well-being” among their top five most
important goals for surgery.
123
Table 7.8 Surgeons’ Goals of Surgery in Descending Order of Frequency
* Number of surgeons (%) who reported that this item was “often”, “very often” or “always” a goal of surgery. Surgeons’ five most frequently reported goals of surgery are in bold print.
GOALS OF SURGERY
MEAN (SD)Range
# of Ratings of 4, 5, 6 (%)
# of Ratings of 5, 6 (%)
1. Prevent worsening of future physical appearance
5.00 (1.06) 2 – 6 22 (92%) 18 (75%)
2. Improve current physical appearance
4.67 (1.05) 2 – 6 22 (92%) 13 (54%)
3. Improve current self-esteem 3.25 (1.19)
0 – 5 11 (46%) 3 (13%) 4. To improve current emotional well-
being 3.00 (1.35)
0 – 5 11 (46%) 2 (8%)
5. Prevent loss of future self-esteem 2.96 (1.30)
0 – 5 9 (38%) 2 (8%)
6. Prevent future lung/heart problems 2.63 (1.50)
0 – 5 6 (25%) 3 (13%) 7. Prevent problems with future emotional
well-being 2.58 (1.50)
0 – 5 7 (29%) 2 (8%)
8. Prevent future general health problems 2.58 (1.50)
0 – 5 7 (29%) 2 (8%)
9. Prevent future back pain 2.33 (1.17)
0 – 4 4 (17%) 0 10. Prevent future restriction of physical
activities 2.13 (1.12)
0 – 4 1 (4%) 0
11. To eliminate need to wear a brace 2.00 (1.72)
0 – 5 5 (21%) 2 (8%)
12. Decrease current back pain 1.96 (1.08)
0 – 4 1 (4%) 0 13. Prevent future restriction of participation
in sport/recreation 1.67 (1.17)
0 – 4 2 (8%) 0 14. Improve employment and career
prospects 1.67 (1.09)
0 – 3 0 0
15. Prevent early mortality 1.61 (1.50)
0 – 5 2 (8%) 1 (4%) 16. Prevent problems with future
relationships/marriage 1.54 (1.32)
0 – 5 1 (4%) 1 (4%) 17. Improve current
friendships/relationships 1.50 (1.32)
0 – 4 1 (4%) 0
18. Improve current physical activities 1.38 (1.01)
0 – 3 0 0 19. Improve current participation in
sport/recreation 1.13 (0.99)
0 – 3 0 0 20. Prevent problems with pregnancy or
childbirth 0.88 (0.85)
0 – 2 0 0
21. Prevent problems with sexual function 0.63 (0.82)
0 – 2 0 0
124
Table 7.9 Surgeons’ Goals of Surgery Ranked in Descending Order of Importance
GOALS OF SURGERY
Mean* (SD)
Range*
# of times ranked 1
(10 points)(%)
# of times ranked 2 (9 points)
(%)
# of times ranked in
top 3 goals (%)
# of times ranked in
top 5 goals (%)
1. Prevent worsening of future physical appearance
8.46 (2.75) 0 – 10 9 (38%) 11(46%) 21 (88%) 22 (92%)
2. Improve current physical appearance
7.96 (3.44) 0 – 10 12 (50%) 6 (25%) 18 (75%) 20 (83%)
3. Prevent future lung/heart problems
4.04 (3.87) 0 – 10 3 (13%) 1 (4%) 6 (25%) 11 (46%)
4. Prevent future back pain 3.58 (3.37)
0 – 9 0 2 (8%) 4 (17%) 9 (38%) 5. To improve current
emotional well-being 3.13 (3.59)
0 – 9 0 2 (8%) 6 (25%) 7 (29%) 6. Prevent future general
health problems 2.96 (3.44)
0 – 9 0 2 (8%) 3 (13%) 6 (25%) 7. Prevent problems with future
emotional well-being 2.92 (2.89)
0 – 8 0 0 1 (4%) 6 (25%)
8. Improve current self-esteem 2.75 (3.33)
0 – 8 0 0 3 (13%) 8 (33%) 9. Prevent loss of future self-
esteem 2.71 (3.13)
0 – 8 0 0 1 (4%) 6 (25%) 10. Prevent future restriction of
physical activities 2.17 (2.68)
0 – 8 0 0 1 (4%) 4 (17%) 11. To eliminate need to wear a
brace 1.83 (2.93)
0 – 8 0 0 2 (8%) 4 (17%)
12. Decrease current back pain 1.75 (2.79)
0 – 8 0 0 1 (4%) 4 (17%) 13. Prevent future restriction of
participation in sport/recreation
1.38 (2.58) 0 – 8 0 0 1 (4%) 4 (17%)
14. Prevent early mortality 0.75 (1.78)
0 – 8 0 0 1 (4%) 1 (4%) 15. Improve current physical
activities 0.63 (1.58)
0 – 5 0 0 0 0 16. Improve current participation
in sport/recreation 0.46 (1.53)
0 – 7 0 0 0 1 (4%) 17. Prevent problems with future
relationships/marriage 0.46 (1.28)
0 – 5 0 0 0 0 18. Improve employment and
career prospects 0.46 (1.47)
0 – 7 0 0 0 1 (4%) 19. Improve current
friendships/relationships 0.04 (0.20)
0 – 1 0 0 0 0 20. Prevent problems with
pregnancy or childbirth 0.04 (0.20)
0 – 1 0 0 0 0 21. Prevent problems with
sexual function 0.04 (0.20)
0 - 1 0 0 0 0 * Goal ranked # 1 scored 10 points; # 2 scored 9 points, ……….. # 10 scored 1 point; goals ranked below # 10 were scored 0. Top 5 goals are highlighted in bold print.
125
7.6 Comparison of Patients’ and Parents’ Desires (wishes) with Surgeons’
Goals of Surgery for Scoliosis
The overall rankings from most to least desired priorities were determined for patients
and parents respectively. (See Table 7.2 & 7.4) Similarly, the overall rankings of
surgeon goals were determined from Section III of the Surgeon Questionnaire. (See
Table 7.9)
Hypothesis 8: Patients’ and Parents’ ranking of importance of (pre-treatment) desires
of surgery are different from Surgeons’ ranking of importance of goals of surgery.
Table 7.10 Top 5 ranked reasons for/goals of surgery for patients, parents & surgeons.
RANK ORDER OF
IMPORTANCE
CHILDREN’S DESIRES OF
SURGERY
PARENTS’
DESIRES OF SURGERY
SURGEONS’ GOALS OF SURGERY
1
Prevent worsening of physical appearance in the future
2
Improve present
physical appearance
Prevent future lung and heart
problems
Improve present emotional well-
being
3
Prevent
future pain
Improve present
physical appearance
Prevent future
emotional problems
4
Prevent future lung and heart
problems
Prevent
future pain
Improve present
physical appearance
5
Prevent general health problems in the
future
Prevent future lung and heart
problems
126
Prevention of future deterioration of physical appearance (deformity) was the highest
ranked reason for undergoing surgery by patients and their parents, and was also the
most surgeons’ most important goal of surgery for idiopathic scoliosis. Improvement of
current physical appearance and prevention of future lung and heart problems were also
among the top five reasons/goals for surgery for, patients, their parents and surgeons.
Patients and parents ranked prevention of future back pain and prevention of future
health problems as one of their top five reasons for surgery but these were not important
goals for surgeons (p<0.0005). Surgeons ranked improvement of current emotional
well-being and prevention of future emotional problems among the highest ranked goals
of surgery (p<0.0005).
127
Table 7.11 Patients, Parents, Parents’ perception of their child’s desires, All Canadian Surgeons’ goals, & HSC Surgeons’ goals (Top 5 desires/goals are colour coded)
Patients’ Desires
Parents’ Desires
Parents’ Perception of
Child’s Desires
All Surgeons’
Goal
HSC Surgeons’
Goals Prevent worsening of physical appearance
7.11 (2.57) 1
7.65 (2.30) 1
7.76 (2.44) 1
8.46 (2.75) 1
7.00 (4.69) 1
Improve current physical appearance
6.69 (3.46) 2
6.37 (3.14) 3
7.59 (3.03) 2
7.96 (3.44) 2
5.00 (5.77) 4
Prevent future back pain 6.17 (2.93)
3 5.76 (3.30)
4 4.47 (3.40)
3 3.58 (3.37)
4 0.50 (1.0)
11 Prevent future lung/heart
problems 4.65 (3.93)
4 6.55 (3.71)
2 3.84 (3.64)
5 4.04 (3.87)
3 4.25 (5.06)
5 Prevent future general
health problems 4.31 (3.44)
5 5.20 (3.66)
5 4.00 (3.56)
4 2.96 (3.44)
6 0.00
Decrease current back pain
4.19 (3.98) 6
2.80 (3.55) 8
3.47 (3.83) 6
1.75 (2.79) 12
0.00
Prevent restriction of future physical activity
3.31 (2.88) 7
2.98 (2.65) 7
3.02 (2.52) 8
2.17 (2.68) 10
1.50 (3.0) 8
Prevent restriction in future participation of sport/recreation
2.57 (3.01) 8
1.04 (1.74)
15
1.71 (2.59)
11 1.38 (2.58)
13
0.75 (1.50)
10 Improve current self-
esteem 2.52 (3.08)
9 2.06 (2.95)
10 2.14 (2.70)
9 2.75 (3.33)
8 4.00 (2.83)
6 Eliminate need to wear a
brace 2.46 (3.87)
10 1.37 (2.46)
14 3.12 (3.75)
7 1.83 (2.93)
11 1.00 (2.0)
9
Prevent early mortality 1.5 (2.6)
11 3.02 (4.16)
6 2.14 (3.63)
10 0.75 (1.78)
14 0.00
Prevent loss of self-esteem in the future
1.28 (2.33) 12
1.90 (2.15) 11
1.67 (2.05) 12
2.71 (3.13) 9
3.75 (2.50) 7
Prevent problems with pregnancy/childbirth
1.2 (2.12) 13
1.75 (2.51) 12
1.29 (2.28) 17
0.04 (0.20) 20
0.00
Improve current emotional well-being
1.13 (2.27) 14
1.59 (2.33)
13
1.47 (2.34)
15 3.13 (3.59)
5
6.25 (4.19)
2
Prevent future emotional or psychological problems
1.07 (1.99) 15
2.45 (2.50)
9
1.31 (2.00)
16 2.92 (2.89)
7
5.50 (3.70)
3 Improve current physical
activities 0.85 (1.76)
16 0.55 (1.57)
17 1.63 (2.63)
13 0.63 (1.58)
15
0.00
Improve participation in sport/recreation
0.85 (2.08) 17
0.22 (0.83)
21
0.78 (1.97)
19 0.46 (1.28)
17
0.00
Prevent problems with future
relationships/marriage 0.52 (1.49)
18
0.86 (1.71)
16
1.61 (2.56)
14 0.46 (1.47)
18
0.00
Improve employment/career
opportunities 0.43 (1.02)
19
0.37 (1.23)
18
1.06 (2.50)
18 0.04 (0.20)
19
0.00
Improve current friendships/relationships
0.35 (1.08) 20
0.35 (1.13)
19
0.73 (1.99)
20 0.46 (1.53)
16
0.00
Prevent problems with sexual function
0.35 (1.36) 21
0.25 (0.98)
20
0.33 (1.16)
21 0.04 (0.20)
21
0.00
128
7.7 Summary
In this chapter, we explored what patients and parents want from the surgery for
scoliosis and how they ranked these desires or wishes in the order of importance.
Correspondingly, surgeons provided their goals or reasons for scoliosis surgery and
ranked these goals in their order or importance. We compared patients’ desires with
those of their parents. We were also interested in determining whether parents were
aware of their child’s desires. Finally we compared the desires of patients and their
parents with the goals of surgery reported by surgeons who treat scoliosis.
Although patients report a wide range in the strength desires for each of the goals of
surgery, their strongest desire of surgery and consistently the most important reason for
undergoing surgery was related to preventing deterioration of, or improving, physical
appearance. Their parents were identical in this regard. The five most important
reasons for surgery reported by parents were the same as the top five most important
reasons for surgery reported by patients. Although, parents had very similar desires or
wishes as their children, the strength of their desires was consistently greater than their
children across all domains and items/goals. However, parents seemed to recognize
this difference and were able to predict their children’s most important desires as well as
the strength of these desires. This was consistent with the finding of parents’ greater
concerns about scoliosis than their children and their knowledge of this difference.
Like patients and parents, Canadian scoliosis surgeons also identified physical
appearance as the most frequent and most important reason for recommending surgery
for scoliosis. Surgeons, particularly those from the Hospital for Sick Children, identified
goals pertaining to emotions among the top five goals but these were not rated as
129
important reasons by their patients or their parents. Prevention of future back pain was
one of the top five reasons for surgery for patients, parents and Canadian scoliosis
surgeons but not at all for surgeons from the Hospital for Sick Children. Surgeons from
the Hospital for Sick Children reported similar importance rankings as other Canadian
surgeons, but unlike their counterparts, did not rank “prevent future back pain” as an
important goal for surgery. Instead they prioritized “prevent future emotional problems”
along with “improve current emotional well-being” among their top five most important
goals for surgery.
130
Chapter 8 Expectations of the Natural History & Surgical Outcomes for Scoliosis
This chapter deals with expectations pertaining to the natural history and surgical
treatment of scoliosis, respectively. Expectations are defined as the estimation of the
likelihood (probability) that a given event or outcome might occur. Respondents were
asked to report their expectations regarding scoliosis (their perception of the prognosis
or natural history of the untreated condition), as well as expectations about treatment
(surgery) of scoliosis.
8.1 Prior Expectations of Scoliosis: Perception of Natural History
Aim 4 of the thesis was to describe and compare patients’, parents’ and surgeons’
expectations of the natural history of scoliosis. Patients and parents were asked to
report their perception of the likelihood that a given event might occur in the future
because of the scoliosis. This likelihood was rated on an eight point ordinal scale of
probabilities ranging from “Not a problem: 0%” (0) to “Extremely likely: > 95%” (7). The
surgeon’s perspective on the natural history of untreated idiopathic scoliosis was
measured by asking each surgeon to consider a typical patient with adolescent
idiopathic scoliosis who met that surgeon’s criteria for recommending surgery, and to
report the likelihood that each of the listed events might occur, using the same range of
probabilities. Means and standard deviations were determined for the perceived
likelihood that a given event (13 items) might occur in the future because of untreated
scoliosis, from the perspective of (i) Patients, (ii) Parents, (iii) Parents’ perception of their
Child’s expectations, and (iv) Surgeons, respectively. The perceived likelihood of future
problems was also calculated for each of the 5 domains: (i) physical appearance, (ii)
pain, (iii) physical function, (iv) psychosocial: social function, emotion/self esteem, and
(v) health.
131
8.1.1 Patients’ Prior Expectations of Scoliosis: Perception of Natural History
Patients reported a wide range of beliefs (0 – 7) about the likelihood of various problems
if their scoliosis was left untreated.
Table 8.1 Patients’ Expectations Regarding Scoliosis Means (std. dev); Ranges All Patients
n = 55 Girls
n = 48 Boys n = 7
Worsening Physical Appearance 6.02 (1.33)
0 – 7 5.96 (1.35)
0 – 7 6.43 (1.13)
4 – 7 Develop
Back Pain 5.82 (1.50) 0 – 7
5.75 (1.54) 0 – 7
6.29 (1.25) 4 – 7
Restricted Physical Activities 5.42 (1.37)
0 – 7 5.35 (1.39)
0 – 7 5.86 (1.21)
4 – 7 Restricted
Sports/Recreation 5.47 (1.37) 0 – 7
5.44 (1.38) 0 – 7
5.71 (1.38) 4 – 7
Emotional Problems 4.11 (1.86)
0 – 7 4.02 (1.80)
0 – 7 4.71 (2.29)
0 – 7 Poorer
Self-Esteem 4.93 (1.78) 0 – 7
4.92 (1.70) 0 – 7
5.00 (2.45) 0 – 7
Problems Relationship/marriage 3.75 (1.84)
0 – 7 3.60 (1.87)
0 – 7 4.71 (1.38)
3 – 7 Problems with
Pregnancy/Childbirth 3.75 (2.35) 0 – 7
4.17 (2.15) 0 – 7
N/A
Problem with Sexual Function 2.67 (2.22)
0 – 7 2.69 (2.31)
0 – 7 2.57 (1.62)
0 – 4 Employment/Career
problems 3.53 (2.11) 0 – 7
3.46 (2.09) 0 – 7
4.00 (2.31) 1 – 7
Lung & Heart Problems 4.58 (2.31)
0 – 7 4.50 (2.39)
0 – 7 5.14 (1.68)
2 – 7 General Health
Problems 4.96 (1.86) 0 – 7
4.90 (1.88) 0 – 7
5.43 (1.72) 2 – 7
Shorter Life 3.49 (2.07)
0 – 7 3.48 (2.05)
0 – 7 3.57 (2.37)
0 – 7
Overall they believed the following items as the top most likely consequences of their
scoliosis (mean score out of 7; standard deviation). (See Table 8.1 & Figure 8.1)
132
i. Worsening of physical appearance in the future (6.02, 1.33): 73% (40/55) of
patients believed that deterioration of physical appearance in the future was either
very or extremely likely;
ii. Back pain in the future (5.82; 1.5): 65% (36/55) of patients believed that future
back pain was either very or extremely likely;
iii. Restriction of future sports and recreational activities (5.47; 1.37) & Restriction of
future physical activities (5.42; 1.37): 49% (27/55) & 45% (25/55) of patients
respectively believed that it was very or extremely likely that future recreational and
physical functional activities would be restricted due to their scoliosis;
iv. Health Problems (4.96; 1.86): 45% (25/55) of patients believed that they were very
or extremely likely to develop future general health problems if their scoliosis was
not treated;
v. Effect on Self esteem (4.93; 1.78): 44% (24/55) of patients believed that if their
scoliosis was not treated it was very or extremely likely to affect their self esteem;
vi. Lung and Heart Problems (4.58; 2.31): 44% (24/55) of the patients believed that
they would be very or extremely likely to develop lung and heart problems in the
future if their scoliosis was left untreated.
A significant proportion of patients also believed that they were at least likely (>50%
probability) to experience future problems with pregnancy & childbirth (20/48: 42%);
emotional problems (22/55: 40%); shorter life span (21/55: 38%); problems with
employment (19/55: 35%); and relationship & marital problems (16/55: 29%), if their
scoliosis was not treated. Although 25% (14/55) believed that future difficulties with
sexual function was likely, the majority (32/55: 58%) believed that this was unlikely to
extremely unlikely.
133
Boys in this cohort had similar beliefs about the consequences of untreated scoliosis as
the girls. However, they tended to believe that these consequences were slightly more
likely than the girls did for all issues except future sexual problems. None of these
differences reached statistical significance. (See Table 8.1 & Figure 8.1)
Patients' Expectations Regarding Scoliosis (Natural History)
0
1
2
3
4
5
6
7
Wor
se A
ppea
ranc
e
Back
Pai
n
Res
trict
ed S
ports
Dec
linin
g P
hysi
cal
Act
iviti
es
Hea
lth P
robl
ems
Poo
rer S
elf-E
stee
m
Lung
/Hea
rt Pr
oble
ms
Em
otio
nal P
robl
ems
Rel
atio
nshi
p Pr
oble
ms
Preg
nanc
y Pr
oble
ms
Em
ploy
men
t pro
blem
s
Sho
rter L
ife
Sex
ual P
robl
ems
Like
lihoo
d All PatientsGirlsBoys
Figure 8.1 Patients’ mean expectations (perception of likelihood) of untreated scoliosis with standard deviations, in decreasing order of perceived likelihood.
134
8.1.2 Parents’ Prior Expectations of Scoliosis: Perception of Natural History
Like their children, parents reported a wide range of beliefs (0 – 7) about the likelihood of
various problems for their child, if their child’s scoliosis was left untreated.
Table 8.2 Parents’ Expectations Regarding Scoliosis Means (std. dev); Ranges All Parents
n = 55 Parents of
Girls n = 48
Parents of Boys n = 7
Worsening Physical Appearance 6.60 (0.95)
2 – 7 6.59 (1.00)
2 – 7 6.71 (0.49)
6 – 7 Develop
Back Pain 6.13 (1.21) 2 – 7
6.15 (1.19) 2 – 7
6.00 (1.41) 4 – 7
Restricted Physical Activities 6.04 (1.39)
0 – 7 6.13 (1.11)
3 – 7 5.43 (2.64)
0 – 7 Restricted
Sports/Recreation 5.96 (1.47) 0 – 7
6.04 (1.26) 2 – 7
5.43 (2.51) 0 – 7
Emotional Problems 5.81 (1.54)
0 – 7 5.78 (1.58)
0 – 7 6.00 (1.41)
4 – 7 Poorer
Self-Esteem 5.85 (1.36) 2 – 7
5.85 (1.37) 2 – 7
5.86 (1.46) 3 – 7
Problems Relationship/marriage 4.53 (2.11)
0 – 7 4.61 (2.14)
0 – 7 4.00 (1.91)
0 – 6 Problems with
Pregnancy/Childbirth 5.28 (1.66) 0 – 7
5.28 (1.66) 0 – 7
N/A
Problem with Sexual Function 3.38 (2.29)
0 – 7 3.46 (2.31)
0 – 7 2.86 (2.27)
0 – 6 Employment/Career
problems 4.49 (1.75) 0 – 7
4.57 (1.61) 0 – 7
4.00 (2.58) 0 – 7
Lung & Heart Problems 5.60 (1.46)
2 – 7 5.61 (1.48)
2 – 7 5.57 (1.40)
3 – 7 General Health
Problems 5.74 (1.42) 2 – 7
5.74 (1.47) 2 – 7
5.71 (1.11) 4 – 7
Shorter Life 3.94 (2.32)
0 – 7 3.89 (2.35)
0 – 7 4.29 (2.21)
0 – 7
135
Overall they believed the following items as the top most likely consequences of their
child’s scoliosis (mean score out of 7; standard deviation). (See Table 8.2 & Figure 8.2)
i. Worsening of physical appearance in the future (6.60; 0.95): 92% (49/53) of
parents believed that future deterioration in their child’s physical appearance was
either very or extremely likely;
ii. Back pain in the future (6.13; 1.21): 77% (41/53) believed that their child was either
very or extremely likely to experience future back pain;
iii. Restriction of future physical activities (6.04; 1.39) & Restriction of future sports
and recreational activities (5.96; 1.47): 77% (41/55) & 72% (38/53) respectively
believed that it was very or extremely likely that their child’s future recreational and
physical functional activities would be restricted;
iv. Effect on Self esteem (5.85; 1.36) & Future Emotional problems (5.81; 1.54): 68%
(36/53) of parents believed that it was very or extremely likely that if not treated
their child’s scoliosis would have an effect their self esteem and cause emotional
problems;
v. General Health Problems (5.74; 1.42) & Lung and Heart Problems (5.60; 1.46):
63% (34/53) of parents believed that their child would be very or extremely likely to
develop lung and heart problems in the future if their scoliosis was left untreated.
vi. Problems with pregnancy & childbirth (5.28; 1.66): 54% (25/46) of parents believed
that their daughters were very or extremely likely to experience problems during
pregnancy and childbirth as a consequence of their scoliosis.
A significant proportion of parents also believed that their child was at least likely (>50%
probability) to experience future problems with relationships/marriage (27/53: 51%);
have a shorter life span (22/53: 41%); and problems with employment (20/53: 38%).
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Although 30% (16/53) believed that future difficulties with sexual function was likely, a
larger number of parents (22/53: 42%) believed that this was unlikely to extremely
unlikely. Parents of girls in this cohort had similar beliefs about the consequences of
untreated scoliosis as the parents of boys. (See Table 8.2 & Figure 8.2)
Parents' Expectations Regarding Scoliosis (Natural History)
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Figure 8.2 Parents’ mean expectations (perception of likelihood) of untreated scoliosis with standard deviations, in decreasing order of perceived likelihood.
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8.1.3 Parents’ Perception of their Childs’ Prior Expectations of Scoliosis
Parents believe that their children would report a wide range of expectations (0 – 7)
about the likelihood of various problems if their scoliosis was left untreated. Parents
believed that the following items (means; std. dev.): “worsening of physical appearance”
(5.88; 1.85), “restriction of physical activities” (5.38; 1.97), “future back pain” (5.35; 2.17),
“restricted sports & recreation” (5.33; 1.96), and “poorer self esteem” (4.88; 2.18), would
have been the most likely consequences of untreated scoliosis reported by their
children. (See Table 8.3)
Table 8.3 Parents’ Perception of their Childs’ Prior Expectations of Scoliosis Parents’ Perception of their
Child’s Expectations n = 55
Worsening Physical Appearance
5.88 (1.85) 0 – 7
Develop Back Pain
5.35 (2.17) 0 – 7
Restricted Physical Activities
5.38 (1.97) 0 – 7
Restricted Sports/Recreation
5.33 (1.96) 0 – 7
Emotional Problems
4.46 (2.40) 0 – 7
Poorer Self-Esteem
4.88 (2.18) 0 – 7
Problems Relationship/marriage
3.56 (2.51) 0 – 7
Problems with Pregnancy/Childbirth
3.63 (2.54) 0 – 7
Problem with Sexual Function
2.38 (2.33) 0 – 7
Employment/Career problems
3.40 (2.23) 0 – 7
Lung & Heart Problems
4.20 (2.47) 0 – 7
General Health Problems
4.60 (2.40) 0 – 7
Shorter Life
2.48 (2.42) 0 – 7
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8.1.4 Surgeons’ Expectations of Scoliosis: Perception of Natural History
Surgeons’ perspectives about the natural history of untreated idiopathic scoliosis were
measured by asking each surgeon to consider a typical adolescent idiopathic scoliosis
who met that surgeon’s criteria for recommending surgery, and to report the likelihood
that each of the listed events might occur, rated on an eight point ordinal scale of
probabilities ranging from “Not a problem: 0%” (0) to “Extremely likely: > 95%” (7).
Overall, (All) Canadian surgeons believed the following were the top most likely
consequences of untreated scoliosis (mean score out of 7; standard deviation).
i. Worsening of physical appearance in the future (6.17; 0.87): 96% (23/24) of the
surgeons surveyed believed that future deterioration in physical appearance was
likely to extremely likely;
ii. Effect on Self esteem (5.04; 1.30): 71% (17/24) of the surgeons believed that
scoliosis would be likely to extremely likely to have an effect on their patients’ self
esteem;
iii. Future Emotional problems (5.04; 1.33): 67% (16/24) of surgeons believed that
untreated scoliosis was likely to extremely likely to be associated with future
emotional problems for their patients;
iv. Back pain in the future (4.46; 1.53): 50% (12/24) of surgeons also believed that if
left untreated their patients scoliosis was at least likely (>50% probability) to be
associated with future back pain.
A smaller but significant number of surgeons also believed that their patients were at
least likely (>50% probability) to experience future problems with “restricted physical
activities” (9/24: 38%) and “restricted sports & recreation” (9/24: 34%); and problems
with “future relationships/marriage (9/24: 38%). (See Table 8.4)
139
Table 8.4 Surgeons’ Expectations of Scoliosis: Perception of Natural History Surgeons’ (Non-HSC)
Expectations n = 20
HSC Surgeons’ Expectations
n = 4
Differences
p- value Worsening Physical
Appearance 6.25 (0.79) 4 – 7
5.75 (1.26) 4 – 7
0.303
Develop Back Pain 4.75 (1.41)
1 – 7 3.00 (1.41)
1 – 4 0.034
Restricted
Physical Activities 4.10 (1.37) 1 – 7
2.50 (1.73) 1 – 5
0.053
Restricted Sports/Recreation 4.15 (1.35)
1 – 7 2.50 (1.73)
1 – 5 0.044
Emotional Problems 5.25 (1.16)
2 – 7 4.00 (1.83)
2 – 6 0.087
Poorer
Self-Esteem 5.25 (1.12) 2 – 7
4.00 (1.83) 2 – 6
0.079
Problems Relationship/marriage 3.95 (1.64)
1 – 7 2.25 (0.96)
1 – 3 0.060
Problems with
Pregnancy/Childbirth 2.20 (1.11) 0 – 4
1.25 (1.26) 0 – 3
0.138
Problem with Sexual Function 1.80 (0.95)
0 – 3 1.25 (1.26)
0 – 3 0.326
Employment/Career
problems 3.55 (1.39) 1 – 7
1.50 (1.00) 1 – 3
0.011
Lung & Heart Problems 3.75 (1.83)
1 – 7 1.75 (1.50)
1 – 4 0.054
General Health
Problems 3.60 (1.64) 1– 7
1.75 (1.50) 1 – 4
0.049
Shorter Life 2.85 (1.76)
0 – 7 1.25 (1.26)
0 – 3 0.099
140
When compared with their counterparts in other Canadian Institutions, scoliosis
surgeons at the Hospital for Sick Children consistently reported smaller likelihood (lower
probabilities) of occurrence for all the listed items. These were only statistically and
clinically significant for “development of future back pain”, which HSC surgeons believed
was an unlikely to extremely unlikely consequence of untreated scoliosis. (See Table 8.4
& Figure 8.3)
Surgeons' Expectations of Scoliosis (Natural History)
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Other Canadian SurgeonsHSC Surgeons
Figure 8.3 Surgeons’ perception of the likelihood of problems of untreated scoliosis with 95% confidence intervals. Comparison of HSC Surgeons with Other Canadian Surgeons.
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8.1.5 Comparison of Patients’, Parents’ and Surgeons’ Expectations of Scoliosis
The mean scores of (i) Patients, (ii) Parents, the (iii) Parents’ perception of their child’s
expectations, and (iv) Surgeons’ expectations of the natural history of untreated scoliosis
were compared.
Table 8.5 Comparison of Patients’, Parents’ and Surgeons’ Expectations of Scoliosis
All Patients n = 55
All Parents n = 53
Parents’ Perception of Children
All Surgeons
n = 24
HSC Surgeons
n = 4 Worsening Physical
Appearance 6.02 (1.33) 0 – 7
6.60 (0.95)2 – 7
5.88 (1.85) 0 – 7
6.17 (0.87) 4 – 7
5.75 (1.26) 4 – 7
Develop Back Pain 5.82 (1.50)
0 – 7 6.13 (1.21)
2 – 7 5.35 (2.17)
0 – 7 4.46 (1.53)
1 – 7 3.00 (1.41)
1 – 4 Restricted
Physical Activities 5.42 (1.37) 0 – 7
6.04 (1.39)0 – 7
5.38 (1.97) 0 – 7
3.83 (1.52) 1 – 7
2.50 (1.73) 1 – 5
Restricted Sports/Recreation 5.47 (1.37)
0 – 7 5.96 (1.47)
0 – 7 5.33 (1.96)
0 – 7 3.88 (1.51)
1 – 7 2.50 (1.73)
1 – 5 Emotional Problems 4.11 (1.86)
0 – 7 5.81 (1.54)
0 – 7 4.46 (2.40)
0 – 7 5.04 (1.33)
2 – 7 4.00 (1.83)
2 – 6 Poorer
Self-Esteem 4.93 (1.78) 0 – 7
5.85 (1.36)2 – 7
4.88 (2.18) 0 – 7
5.04 (1.30) 2 – 7
4.00 (1.83) 2 – 6
Problems Relationship/marriage 3.75 (1.84)
0 – 7 4.53 (2.11)
0 – 7 3.56 (2.51)
0 – 7 3.67 (1.66)
1 – 7 2.25 (0.96)
1 – 3 Problems with
Pregnancy/Childbirth 3.75 (2.35) 0 – 7
5.28 (1.66)0 – 7
3.63 (2.54) 0 – 7
2.04 (1.16) 0 – 4
1.25 (1.26) 0 – 3
Problem with Sexual Function 2.67 (2.22)
0 – 7 3.38 (2.29)
0 – 7 2.38 (2.33)
0 – 7 1.71 (1.00)
0 – 3 1.25 (1.26)
0 – 3 Employment/Career
problems 3.53 (2.11) 0 – 7
4.49 (1.75)0 – 7
3.40 (2.23) 0 – 7
3.21 (1.53) 1 – 7
1.50 (1.00) 1 – 3
Lung & Heart Problems 4.58 (2.31)
0 – 7 5.60 (1.46)
2 – 7 4.20 (2.47)
0 – 7 3.42 (1.91)
1 – 7 1.75 (1.50)
1 – 4 General Health
Problems 4.96 (1.86) 0 – 7
5.74 (1.42)2 – 7
4.60 (2.40) 0 – 7
3.29 (1.73) 1– 7
1.75 (1.50) 1 – 4
Shorter Life 3.49 (2.07)
0 – 7 3.94 (2.32)
0 – 7 2.48 (2.42)
0 – 7 2.58 (1.77)
0 – 7 1.25 (1.26)
0 – 3
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Hypothesis 9: Patients’ (pre-treatment) expectations about scoliosis are different from
their Parents’ (pre-treatment) expectations about scoliosis. Patients were matched with
their parents. (See Table 8.5 & Figure 8.4)
Patient's vs Parents' Expectations of Scoliosis (Natural History)
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CHILDPARENT
0.006
0.307
0.122
0.073
-0.04
0.327
0.209
0.232
0.34
0.551
0.335
0.19
0.199
Pearson Correlation
Patient vs.
Parent
-0.6
0.012
-0.32
0.157
-0.53
0.047
-0.66
0.014
-0.83
0.014
-0.91
0.001
-1.09
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-1.72
0.000
-0.81
0.01
-0.89
0.005
-1.04
0.001
-0.43
0.27
-0.72
0.071
Mean Difference
(paired t-test)
p-value (Sig. 2-
tailed)
Figure 8.4 Mean likelihood of consequences with 95% confidence intervals based on patients’, parents’ beliefs about the likelihood of consequences of scoliosis, arranged in descending order of likelihood from the children’s perspective.
Overall, parents had similar expectations as patients. There was a close correlation
between the mean expectation scores of parents and children (r = 0.92). However,
when parents’ expectations were compared with their respective children’s expectations
for each of the items, there was very poor correlation for most consequences. (See
Figure 8.4) Parents consistently believed that there was a greater likelihood (probability
of occurrence) of all the listed items occurring in the future if their child’s scoliosis was
143
not treated, than their children. These differences were all statistically significant, with
the exception of expectations of a shorter life (p = 0.27); future back pain (p = 0.157), &
sexual problems (p = 0.071)
In order to determine parents’ knowledge of their children’s perspective on the natural
history of scoliosis, parents also reported their perception of their child’s expectations of
each of the consequences, which was compared with their child’s report of expectations.
Hypothesis 10: Patients’ (pre-treatment) expectations about scoliosis are different from
their Parents’ perception of their child’s (pre-treatment) expectations about scoliosis.
Patients' Expectations vs Parents' Perception of Child's Expectations
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0.252
0.315
0.298
0.159
0.264
0.443
0.335
0.339
0.25
0.498
0.116
0.285
0.455
Pearson Correlation
Patient vs.
Parent
0.115
0.68
0.462
0.14
0.115
0.68
0.00
1.00
0.269
0.46
0.038
0.897
0.255
0.51
-0.37
0.298
0.17
0.65
0.15
0.65
0.08
0.85
1.02
0.009
0.27
0.42
Mean Difference
(paired t-test)
p-value (Sig. 2-
tailed)
Figure 8.5 Mean likelihood of consequences with 95% confidence intervals based on patients’, parents’ perception of their children’s beliefs.
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Parents’ perceptions of their children’s expectations were remarkably similar to their
children’s actual beliefs. The mean differences for all items were very small (clinically
insignificant) and statistically not significant, with one exception. Parents
underestimated their children’s beliefs about the likelihood of a “shorter life” as a
consequence of untreated scoliosis by 1 level (p = 0.009). Even children, however,
believed this was an unlikely consequence of scoliosis. (See Table 8.5 & Figure 8.5)
Hypothesis 11: Patient’s and Parents’ expectations of the natural history of scoliosis
are different from Surgeon’s expectations of the natural history.
Patient’s and Parents’ expectations of the natural history of untreated scoliosis were
compared with surgeons’ perceptions of the natural history. Comparisons were made
between patients and their respective surgeons (HSC surgeons); and between parents
and their children’s surgeons (HSC Surgeons), using repeated measures analysis of
variance and paired t-tests. Therefore, each HSC surgeon’s responses were matched to
their respective patients and their parents. (See Table 8.5)
Patients believed there was a much higher likelihood of occurrence for the items listed,
than their respective surgeons. These differences were all large and statistically
significant (p < 0.0005), with the exception of patients’ perception of the likelihood of
“worsening physical appearance”, and “future emotional problems”, which were not
significantly different from the surgeons’ beliefs. (See Table 8.5. & Figure 8.6)
Parents believed there was an even higher likelihood of all the consequences listed than
the respective surgeons and these differences were all statistically significant (p
<0.0005), with the exception of the likelihood of “worsening physical appearance”, where
the difference was smaller (0.76; p=0.004). (See Table 8.5 & Figure 8.6)
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Patient's, Parents' & Surgeons' Expectations of Scoliosis (Natural History)
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Patient vs.
HSC Surgeon
0.208
0.41
3.075
0.000
4.06
0.000
4.00
0.000
3.98
0.000
0.64
0.065
3.62
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1.57
0.000
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0.000
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0.000
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0.000
Mean Difference
(paired t-test)
p-value (Sig. 2-
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Parent
vs. HSC
Surgeon
0.765
0.004
3.275
0.000
4.49
0.000
4.57
0.000
4.725
0.000
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0.000
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0.000
1.47
0.000
2.37
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0.000
3.57
0.000
3.53
0.000
2.53
0.000
Mean Difference
(paired t-test)
p-value (Sig. 2-
tailed)
Figure 8.6 Mean likelihood of consequences with 95% confidence intervals based on patients’, parents’ and surgeons’ beliefs.
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8.2 Expectations of Desired Outcomes of Surgery for Scoliosis
Aim 5 of the thesis was to describe and compare patients’, parents’ and surgeons’
expectations of desired outcomes of surgery for scoliosis. Expectations of surgery for
scoliosis were operationalized in two ways.
A. Likelihood or Probability of a Desired Result (Expectancy)
First, patients and parents were asked to report how likely they thought that surgery
would accomplish each of the 21 listed goals. Their perception of the likelihood of each
item occurring was rated on an 8-point ordinal rating scale ranging from “Never: 0%” (0)
to “extremely likely: >95%” (7). In order to measure surgeons’ perception of the
expected outcomes of surgery, surgeons were asked to report the likelihood of each of
the same listed events using the same rating scale.
B. Minimal Acceptable Result to be Satisfied (Value)
Second, patients and parents were asked to report the minimal acceptable result for
them to be satisfied. Minimal acceptable result was defined as the minimum change in
each item (magnitude of improvement or reduction of future risk) due to surgery that
would satisfy the patient or parent. This was rated on a 6-point ordinal scale ranging
from 0 (“no change”) to 5 (“very large change”) for each of the 21 listed goals/items.
Means and standard deviations of the patients’, parents’ and surgeons’ Expectations of
Desired Outcomes of Surgery for Scoliosis were determined using the Index of
Expectations for (a) All, (b) Immediate, and (c) Future expectations of surgery as well as
the expectations for each of the 5 domains: (i) physical appearance, (ii) pain, (iii)
physical function, (iv) psychosocial function, and (v) health, as well as for all individual
items. Means and standard deviations of the patients’ and parents’ Minimal Acceptable
Result were determined for all 21 goals/items.
147
8.2.1 Patients’ Expectations of Surgery
A. Likelihood of a Desirable Result
Patients reported a wide range in their overall (prior) expectations of surgery. The
magnitude of overall expectations as measured by the mean Index of All Expectations
was 54.21 (out of 100). Patients’ perception of the likelihood of surgery accomplishing
more present or immediate goals, Index of Immediate Expectations (55.23) was not
different from their perception of the likelihood of future goals, Index of Future
Expectations (53.59). Patients’ desired expectations were greatest in the domains of
Physical Appearance (84.16) and Pain prevention/relief (70.30). (See Table 8.6 &
Figure 8.7).
Table 8.6 Patients’ Expectations of (Desirable) Outcomes of Surgery for Scoliosis All PATIENTS
Means (Std Dev) Range
GIRLS Means (Std Dev)
Range
BOYS Means (Std Dev)
Range
DIFFERENCE(t – test) p - value
All Expectations
54.21 (15.81)
23.81 - 89.80
53.13 (15.52) 23.81 - 85.71
60.93 (17.30)
37.41 - 89.80 0.23
Present Expectations
55.23 (17.10)
23.21 - 96.43 54.54 (16.15)
23.21 - 85.71 59.95 (23.60)
28.57 - 96.43 0.44
Future Expectations
53.59 (17.67)
16.48 - 85.71
52.27 (17.60)
16.48 - 85.71 61.54 (16.45)
40.66 - 85.71 0.20
Appearance Expectations
84.16 (13.02)
42.86 - 100
84.82 (13.15)
42.86 - 100 79.59 (11.97)
57.14 - 92.86 0.33
Pain Expectations
70.30 (20.94)
0 - 100
70.83 (18.26)
28.57 - 100 66.67 (36.27)
0 - 100 0.63
Function Expectations
52.47 (18.50)
20.00 - 97.14
51.13 (18.54)
20.00 - 85.71 61.63 (16.65)
45.71 - 97.14 0.16
Psychosocial Expectations
40.00 (26.14)
0 - 100.00
37.54 (25.64)
0 - 89.80 56.85 (24.87)
20.41 - 100 0.07
Health Expectations
54.22 (25.78)
0 - 89.29
53.79 (27.01)
0 - 89.29 53.57 (15.43)
28.57 – 75.00 0.98
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Patients' Expectations of Desirable Outcomes of Surgery
0.0010.0020.0030.0040.0050.0060.0070.0080.0090.00
100.00To
tal
Exp
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Pre
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Futu
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ALL PATIENTSGIRLSBOYS
Figure 8.7 Patients’ mean level of expectations overall and by domain with 95% confidence intervals.
Analyzed by individual goals/items, patients reported a wide range (0 – 7) in their
perceptions of the likelihood that surgery would accomplish almost all items/goals.
Patients’ highest expectations of surgery (mean score out of a maximum of 7; std. dev.)
were:
i. Prevent worsening of physical appearance (6.02; 0.93): 78% (43/55) patients
believed that surgery was either “very likely” or “extremely likely” to prevent
deterioration in their appearance;
ii. Improve physical appearance (5.76; 1.02): 65% (36/55) patients believed that
surgery was either “very likely” or “extremely likely” to improve their physical
appearance;
iii. Eliminate need for a brace (5.53; 2.17): 71% (39/55) believed that surgery was
either “very likely” or “extremely likely” to eliminate their need to wear a brace in
the future.
149
iv. Prevent future back pain (5.24; 1.69): 51% (28/55) believed that surgery was
either “very likely” or “extremely likely” to prevent them from developing back pain
in the future because of their scoliosis.
v. Prevent future health problems (4.71; 2.01) & Prevent future lung and heart
problems (4.45; 2.41): 40% (22/55) believed that surgery was either “very likely”
or “extremely likely” to prevent future health problems due to scoliosis while 45%
(25/55) believed that surgery was either “very likely” or “extremely likely” to
prevent future lung and heart problems.
vi. Decrease current back pain (4.00; 2.70): 40% (22/55) believed that surgery was
either “very likely” or “extremely likely” to decrease current back pain.
Overall patients reported their lowest expectations of surgery (least likelihood of benefit)
on present relationships; prevention of future problems with sexual function; future
relationships; and employment. They also thought it unlikely that surgery would prevent
problems with pregnancy or childbirth; prevent or improve present or future emotional
problems; or prolong life. However, at least some patients, between 4/55 (7%) and
13/55 (24%) believed that surgery was either “very likely” or “extremely likely” to
accomplish these goals, although in aggregate these goals were perceived to be least
likely to occur.
The boys in this cohort had similar expectations of surgery as the girls, sharing eight of
the top ten expectations. Boys had significantly higher expectations that surgery would
prevent restriction of future physical activity (p = 0.04) and future participation in
sports/recreation (p = 0.03). They also had higher expectations that surgery would
prevent future loss of self esteem. This was in keeping with the finding that boys
reported greater concern about loss of self esteem due to scoliosis, than girls.
150
B. Minimal Acceptable Result to be Satisfied
Patients reported a wide range of what minimal acceptable result or change they would accept to
be satisfied (0 – 5 for all items/goals listed). On average, they reported relatively modest
expectations of surgery based on the minimum change (magnitude of improvement or reduction
of future risk) they would accept to be satisfied with surgery. (See Table 8.7 & Figure 8.8)
Their top five priorities (mean level out of 5; standard deviation) were:
i. Prevent worsening physical appearance (3.76; 0.96): 69% (38/55) of patients reported
that they would only be satisfied with a “large” (50% - 75%) or “very large” (>75%)
reduction in the risk of future worsening appearance following surgery;
ii. Prevention of future back pain (3.48; 1.11): 49% (27/55) of patients reported that it would
take a “large” (50% - 75%) or “very large” (>75%) reduction in the risk of future back pain
to be satisfied with their operation;
iii. Improvement of physical appearance (3.22; 1.26): 44% (24/55) of patients reported that it
would require a “large” (50% - 75%) or “very large” (>75%) improvement of their
appearance for them to be satisfied with surgery;
iv. Prevention of lung & heart problems (3.13; 1.69) and prevention of future general health
problems (3.13; 1.54): 50% of patients would accept nothing less than a “large” (50% -
75%) or “very large” (>75%) reduction in the risk of future lung & heart problems or general
health problems;
v. Elimination of brace (3.04; 2.21): 60% (33/55) of patients accept nothing less than a
“large” (50% - 75%) or “very large” (>75%) reduction in the risk of having to wear a brace
in the future.
For the remainder of the items the average minimal acceptable change for satisfaction was <
25%. However, between 31% and 35% of patients reported that they would accept nothing less
than a “large” (50% - 75%) or “very large” (>75%) improvement or reduction in the risk of
151
restriction of future physical activities; restriction of future recreation; problems with future self
esteem; early death; and current back pain.
Table 8.7 Patients’ Expectations of Surgery: Minimal Acceptable Result to be Satisfied
ALL PATIENTS Mean (Std. Dev)
Range
GIRLS Mean (Std. Dev)
Range
BOYS Mean (Std. Dev)
Range
DIFFERENCE (t- test) p value
Future Appearance
3.76 (0.96) 1 - 5
3.90 (0.81) 2 – 5
2.86 (1.46) 1 – 4
0.006
Future Pain
3.48 (1.11) 0 – 5
3.49 (1.12) 0 – 5
3.43 (1.13) 2 – 5
0.894
Present Appearance
3.22 (1.26) 0 – 5
3.27 (1.18) 0 – 5
2.86 (1.77) 0 – 5
0.421
Lung/Heart Problems
3.13 (1.69) 0 - 5
3.15 (1.69) 0 – 5
3.00 (1.83) 0 – 5
0.833
Health Problems
3.13 (1.54) 0 – 5
3.08 (1.57) 0 – 5
3.43 (1.40) 2 – 5
0.584
Brace 3.04 (2.21)
0 – 5 3.04 (2.22)
0 – 5 3.00 (2.31)
0 – 5 0.963
Future
Function 2.89 (1.26)
0 – 5 2.83 (1.28)
0 – 5 3.29 (1.11)
2 – 5 0.379
Future
Recreation 2.76 (1.33)
0 – 5 2.69 (1.36)
0 – 5 3.29 (1.11)
2 – 5 0.271
Future
Self Esteem 2.36 (1.66)
0 – 5 2.23 (1.65)
0 – 5 3.29 (1.50)
1 – 5 0.116
Early
Mortality 2.31 (1.77)
0 – 5 2.27 (1.78)
0 – 5 2.57 (1.81)
0 – 5 0.679
Present
Pain 2.25 (1.67)
0 – 5 2.33 (1.62)
0 – 5 1.71 (2.06)
0 – 5 0.364
Present
Self Esteem 2.04 (1.59)
0 – 5 2.08 (1.57)
0 – 5 1.71 (1.80)
0 – 5 0.570
Future
Emotions 1.91 (.170)
0 – 5 1.77 (1.63)
0 – 5 2.86 (1.95)
0 – 5 0.113
Present
Function 1.87 (1.43)
0 – 5 1.81 (1.41)
0 – 4 2.29 (1.60)
0 - 5 0.415
Present
Recreation 1.84 (1.41)
0 – 5 1.81 (1.44)
0 – 5 2.00 (1.29)
0 – 4 0.746
Present Emotion
1.67 (1.58) 0 – 5
1.69 (1.55) 0 – 5
1.57 (1.90) 0 – 5
0.858
Pregnancy/ Childbirth
1.56 (1.65) 0 – 5
1.75 (1.67) 0 – 5
N/A
Employment
1.47 (1.43) 0 – 5
1.50 (1.38) 0 – 5
1.29 (1.80) 0 – 5
0.714
Future Relationships
1.25 (1.53) 0 – 5
1.15 (1.47) 0 – 5
2.00 (1.83) 0 – 5
0.170
Sexual Function
1.20 (1.53) 0 – 5
1.21 (1.50) 0 – 5
1.14 (1.86) 0 – 5
0.917
Present Relationships
0.91 (1.34) 0 – 5
0.94 (1.37) 0 – 5
0.71 (1.11) 0 – 3
0.684
Patients’ highest expectations based on minimal acceptable result are highlighted in red.
152
Boys were willing to accept a smaller reduction in the risk of future deterioration of their physical
appearance than girls and this difference was statistically significant (p = 0.006). The boys,
reported higher expectations of surgery than girls for goals pertaining to future physical activities,
sports and recreation and future self esteem. These differences did not reach statistical
significance. In all other respects the girls and boys of this cohort had similar expectations,
sharing four of the top six priorities. (See Table 8.7 & Figure 8.8)
Patients' Expectations of Surgery: Minimal Acceptable Results
0
1
2
3
4
5
Futu
re A
ppea
ranc
e
Futu
re P
ain
Pres
ent A
ppea
ranc
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Lung
/Hea
rt
Hea
lth
Brac
e
Futu
re F
unct
ion
Futu
re R
ecre
atio
n
Futu
re S
elf E
stee
m
Mor
talit
y
Pres
ent P
ain
Pres
ent S
elf E
stee
m
Futu
re E
mot
ions
Pres
ent F
unct
ion
Prse
nt R
ecre
atio
n
Pres
ent E
mot
ion
Preg
nanc
y/C
hild
birth
Empl
oym
ent
Futu
re R
elat
ions
hips
Sexu
al F
unct
ion
Pres
ent R
elat
ions
hips
Leve
l of C
hang
e
ALL PATIENTS GIRLS BOYS
Figure 8.8 Patients’ mean level of minimal acceptable change (magnitude of improvement or reduction of future risk) with standard deviations, arranged in decreasing order. Threshold level of 3 indicates a “moderate change” (25% - 50%).
Moderate Change (25% - 50%)
153
8.2.2 Parents’ Expectations of Surgery
A. Likelihood of a Desirable Result
Parents reported a wide range in their overall (prior) expectations of surgery for their
children. The magnitude of overall expectations as measured by the mean Index of All
Expectations was 63.60 (out of 100). Parents’ perception of the likelihood of surgery
accomplishing more present or immediate goals, Index of Immediate Expectations
(60.75) was not different from their perception of the likelihood of future goals, Index of
Future Expectations (65.35). Parents’ desired expectations were greatest in the
domains of Physical Appearance (89.08) and to a lesser extent Pain prevention/relief
(66.40) and Health expectations (66.51) (See Table 8.8 & Figure 8.9).
Table 8.8 Parents’ Expectations of (Desirable) Outcomes of Surgery for Scoliosis All PARENTS
Means (Std Dev) Range
GIRLS’ PARENTS Means (Std Dev)
Range
BOYS’ PARENTS Means (Std Dev)
Range
DIFFERENCE (t – test) p - value
All Expectations
63.60 (13.17)
34.69 – 90.48
64.54 (12.90)
34.69 – 90.48 57.43 (14.24)
41.50 – 78.91 0.19
Present Expectations
60.75 (16.96)
23.21 – 100
62.73 (15.87)
30.36 – 100 47.70 (19.36)
23.21 – 67.86 0.0275
Future Expectations
65.35 (13.71)
29.67 – 86.81
65.65 (13.56)
29.67 – 86.81 63.42 (15.65)
39.56 – 85.71 0.69
Appearance Expectations
89.08 (10.63)
57.14 – 100
89.91 (10.71)
57.14 – 100 83.67 (8.95)
71.43 – 100 0.15
Pain Expectations
66.40 (21.99)
0 – 100 68.32 (22.09)
0 – 100 53.74 (17.76)
33.33 – 80.95 0.10
Function Expectations
57.95 (18.46)
8.57 – 91.43
59.75 (15.97)
31.43 – 91.43 46.12 (29.20)
8.57 – 88.57 0.068
Psychosocial Expectations
57.49 (21.04)
0 – 89.80
57.54 (21.40)
0 – 87.76 57.14 (20.00)
36.73 – 89.80 0.96
Health Expectations
66.51 (19.46)
0 – 100 67.24 (20.39)
0 – 100 61.73 (11.61)
42.86 – 75.00 0.49
154
Parents' Expectations of Desirable Outcomes of Surgery
0.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00To
tal
Exp
ecta
tions
Pre
sent
Exp
ecta
tions
Futu
reE
xpec
tatio
ns
App
eara
nce
Exp
ecta
tions
Pai
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xpec
tatio
ns
Func
tion
Exp
ecta
tions
Psy
chos
ocia
lE
xpec
tatio
ns
Hea
lthE
xpec
tatio
ns
Mea
n In
dex ALL PARENTS
GIRLS' PARENTSBOYS' PARENTS
Figure 8.9 Parents’ mean level of expectations overall and by domain with 95% confidence intervals.
Analyzed by individual item, parents reported a wide range (0 – 7) in their perceptions of
the likelihood that surgery would accomplish most items/goals for their children.
Parents’ highest expectations of surgery (mean score out of a maximum of 7; std. dev.)
were:
i. Prevent worsening of physical appearance (6.26; 0.88): 81% (43/53) parents
believed that surgery was either “very likely” or “extremely likely” to prevent
deterioration in their child’s appearance.
ii. Improve physical appearance (6.21; 1.02): 81% (43/53) parents believed that
surgery was either “very likely” or “extremely likely” to improve their child’s
physical appearance at the time. The remainder of parents believed it was likely
(> 50% chance), with no parent rating the likelihood of this item < 5 out of 7.
iii. Prevent future lung and heart problems (5.90; 1.56) & Prevent future health
problems (5.62; 1.71): 74% (39/53) of parents believed that surgery was either
155
“very likely” or “extremely likely” to prevent future lung and heart problems due to
scoliosis while 68% (36/53) believed that surgery was either “very likely” or
“extremely likely” to prevent future health problems for their child.
iv. Prevent future back pain (5.36; 1.65): 58% (31/53) of parents believed that
surgery was either “very likely” or “extremely likely” to prevent their child from
developing back pain in the future because of their scoliosis.
v. Prevent restriction of future physical activities (5.0; 1.37): 36% (19/53) parents
believed that surgery was either “very likely” or “extremely likely” to prevent their
child from having restricted physical activities in the future
vi. Prevent future loss of self esteem (4.85; 1.75), prevent future emotional problems
(4.81; 1.82), and improve present self esteem (4.77; 1.89) were all believed by
42% (22/53) of parents to be either “very likely” or “extremely likely” to occur as a
result of surgery;
vii. Eliminate need for a brace (4.72; 2.90): 60% (32/53) of parents believed that
surgery was either “very likely” or “extremely likely” to eliminate the need for their
child to wear a brace in the future.
Overall parents reported their lowest expectations of surgery (least likelihood of benefit)
on prevention of future problems with sexual function; present relationships; prevention
of problems with pregnancy or childbirth and improvement of current recreation. On
average, they also thought that surgery had a less than 25% chance of improving
current back pain; improving current physical activities; prevent future relationship
problems; or improve employment prospects. However, a significant proportion of
parents, between 9/53 (17%) and 22/53 (42%) believed that surgery was either “very
likely” or “extremely likely” to accomplish these goals for their child.
156
The parents of boys in this cohort had similar expectations of surgery as the girls’
parents, sharing nine of the top ten individual expectations. Girls’ parents had higher set
of immediate (present) expectations of surgery than boys’ parents (p = 0.028). See
Table 8.8 & Figure 8.9.
B. Minimal Acceptable Result to be Satisfied
Parents reported a wide range of what minimal acceptable result or change (magnitude of
improvement or reduction of future risk) they would accept to be satisfied with surgery for their
child. (See Table 8.9 & Figure 8.10) Their top five priorities (mean level out of 5; standard
deviation) were:
i. Prevent worsening physical appearance (4.13; 0.86): 83% (44/53) of parents reported that
they would only be satisfied with a “large” (50% - 75%) or “very large” (>75%) reduction in
the risk of future worsening appearance following surgery for their child;
ii. Prevention of future general health problems (3.75; 1.28) and Prevention of lung & heart
problems (3.68; 1.48): 70% of parents (37/53) would be satisfied with nothing less than a
“large” (50% - 75%) or “very large” (>75%) reduction in the risk of their child’s future
general health problems or lung & heart problems;
iii. Prevention of future back pain (3.60; 1.03): 66% (35/53) of parents reported that it would
take a “large” (50% - 75%) or “very large” (>75%) reduction in the risk of their child’s future
back pain to be satisfied with surgery for their child;
iv. Improvement of physical appearance (3.49; 0.85): 51% (27/53) of parents reported that it
would require a “large” (50% - 75%) or “very large” (>75%) improvement of their child’s
appearance for them to be satisfied with surgery;
v. Prevent loss of future self esteem (3.09; 1.43): 43% (23/53) parents reported that it would
require a “large” (50% - 75%) or “very large” (>75%) reduction in the risk of future loss of
their child’s self esteem to satisfied with the results of surgery.
157
Table 8.9 Parents’ Expectations of Surgery: Minimal Acceptable Result to be Satisfied
ALL PARENTS Mean (Std. Dev)
Range
GIRLS’ PARENTS Mean (Std. Dev)
Range
BOYS’ PARENTS Mean (Std. Dev)
Range
DIFFERENCE (t- test) p value
Future Appearance
4.13 (0.86) 1 – 5
4.13 (0.86) 1 – 5
4.14 (0.90) 3 – 5 0.4
Health 3.75 (1.28)
0 – 5 3.74 (1.32)
0 – 5 3.86 (1.07)
2 – 5 0.54
Lung/Heart 3.68 (1.48)
0 – 5 3.65 (1.51)
0 – 5 3.86 (1.35)
2 – 5 0.67
Future Pain 3.60 (1.03)
1 – 5 3.65 (0.97)
1 – 5 3.17 (1.47)
1 – 5 0.54 Present
Appearance 3.49 (0.85)
1 – 5 3.57 (0.83)
1 – 5 3.00 (0.82)
2 – 4 0.059 Future Self
Esteem 3.09 (1.43)
0 – 5 3.07 (1.47)
0 – 5 3.29 (1.25)
2 – 5 0.64 Future
Function 3.00 (1.05)
1 – 5 3.00 (1.11)
1 – 5 3.00 (0.58)
2 – 4 0.241
Mortality 2.91 (1.93)
0 – 5 2.74 (1.97)
0 – 5 4.00 (1.29)
2 – 5 0.25
Brace 2.89 (2.17)
0 – 5 3.11 (2.07)
0 – 5 1.43 (2.44)
0 – 5 0.58 Future
Emotions 2.89 (1.50)
0 – 5 2.91 (1.50)
0 – 5 2.71 (1.60)
0 – 5 0.84 Present Self
Esteem 2.60 (1.55)
0 – 5 2.65 (1.55)
0 – 5 2.29 (1.60)
0 – 5 0.61 Future
Recreation 2.45 (1.20)
0 – 5 2.48 (1.26)
0 – 5 2.29 (0.76)
1 – 3 0.311 Present
Pain 2.27 (1.82)
0 – 5 2.51 (1.82)
0 – 5 0.71 (0.76)
0 – 2 0.062 Present Emotion
2.26 (1.56) 0 – 5
2.33 (1.56) 0 – 5
1.86 (1.57) 0 – 4 0.3
Pregnancy/ Childbirth
2.21 (1.71) 0 – 5
2.54 (1.59) 0 – 5
N/A N/A
Employment 2.09 (1.58)
0 – 5 1.96 (1.50)
0 – 5 3.00 (1.91)
0 – 5 0.77 Future
Relationships 2.06 (1.49)
0 – 5 2.02 (1.51)
0 – 5 2.29 (1.38)
0 – 4 0.78 Present
Function 1.79 (1.38)
0 – 4 1.93 (1.39)
0 – 4 0.86 (0.90)
0 – 2 0.061 Sexual
Function 1.69 (1.64)
0 – 5 1.74 (1.67)
0 – 5 1.33 (1.51)
0 – 3 0.18 Present
Recreation 1.53 (1.23)
0 - 4 1.65 (1.23)
0 – 4 0.71 (0.95)
0 – 2 0.065 Present
Relationships 1.19 (1.27)
0 - 4 1.15 (1.25)
0 – 4 1.43 (1.51)
0 – 4 0.39 Parents’ highest expectations based on minimal acceptable result are highlighted in red.
158
Parents had more modest expectations for the remainder of the goals/items, with the average
minimal acceptable change of < 25%. However, a significant proportion of parents reported that
they would accept nothing less than a “large” (50% - 75%) or “very large” (>75%) improvement or
reduction in the risk of future brace wear (29/53); early death (25/53); problems with future
emotions (23/53); current back pain (21/53); restriction of future physical activities (17/53); present
self esteem (16/53); present emotional problems (15/53); and problems with future pregnancy or
childbirth (15/53).
Parents' Expectations of Surgery: Minimal Acceptable Results
0
1
2
3
4
5
Futu
re A
ppea
ranc
e
Hea
lth
Lung
/Hea
rt
Futu
re P
ain
Pres
ent A
ppea
ranc
e
Futu
re S
elf E
stee
m
Futu
re F
unct
ion
Mor
talit
y
Brac
e
Futu
re E
mot
ions
Pres
ent S
elf E
stee
m
Futu
re R
ecre
atio
n
Pres
ent P
ain
Pres
ent E
mot
ion
Preg
nanc
y/C
hild
birth
Empl
oym
ent
Futu
re R
elat
ions
hips
Pres
ent F
unct
ion
Sexu
al F
unct
ion
Pres
ent R
ecre
atio
n
Pres
ent R
elat
ions
hips
Leve
l of C
hang
e
ALL PARENTS GIRLS' PARENTS BOYS' PARENTS
Figure 8.10 Parents’ mean level of minimal acceptable change (magnitude of improvement or reduction of future risk) with standard deviations, arranged in decreasing order. Threshold level of 3 indicates a “moderate change” (25% - 50%).
Moderate Change (25% - 50%)
159
The expectations of the parents of girls were similar to those parents of boys with
scoliosis, sharing the same top six priorities. Boys’ parents were willing to accept a
more modest improvement in their child’s current physical appearance (p = 0.06);
current back pain (p=0.06) and current physical activities (p =0.06) than girls’ parents.
(See Table 8.9 & Figure 8.10)
8.2.3 Surgeons’ Expectations of Scoliosis Surgery
Surgeons’ perceptions about the expected outcomes of surgery were measured by
asking them to report how likely they thought surgery would satisfactorily accomplish
each of the 21 listed goals, rated on an 8-point ordinal rating scale ranging from “Never:
0%” (0) to “extremely likely: >95%” (7). Means and standard deviations of the surgeons’
Expectations of Desirable Outcomes of Surgery for Scoliosis were determined using the
Index of Expectations for (a) All, (b) Immediate, and (c) Future expectations of surgery
as well as the expectations for each of the 5 domains: (i) physical appearance, (ii) pain,
(iii) physical function, (iv) psychosocial function, and (v) health, as well as for all
individual items. The results were also stratified by whether the respondent was a
surgeon from the Hospital for Sick Children (HSC Surgeon) or not (All other Canadian
Surgeons). (See Table 8.10 & Figure 8.11)
Analyzed by item, Canadian surgeons believed that surgery was most likely to
satisfactorily accomplish the following outcomes (mean score out of 7; std. dev.):
i. Improve present physical appearance (6.33; 0.64) and prevent worsening of
physical appearance (6.21; 0.59): 92% (22/24) of all Canadian scoliosis surgeons
surveyed reported that surgery these was either “very likely” or “extremely likely”
to improve their patients’ current physical appearance and prevent it from
worsening in the future.
160
ii. Eliminate need for brace (5.43; 2.29): 71% (17/24) surgeons believed that
surgery was either “very likely” or “extremely likely” to accomplish this outcome.
iii. Improve present self-esteem (5.17; 1.11): 38% (9/24) surgeons believed that
surgery was either “very likely” or “extremely likely” to improve their patients’
current self esteem.
iv. Improve current emotions (4.92; 1.06), prevent loss of future self-esteem (4.74;
1.29), and prevent future emotional problems (4.61; 1.27): Although on average,
surgeons believe these outcomes were likely, only 4 (17%) to 6 (25%) out of the
24 surgeons reported that these were either “very likely” or “extremely likely” to
occur as a result of surgery.
v. Prevention of future lung/heart problems (4.04; 1.99): 21% (5/24) of surgeons
reported that surgery was either “very likely” or “extremely likely” to prevent future
problems related to the lung or heart.
Prevention of problems with sexual function, pregnancy/childbirth, improvement in
current recreation or physical activities and prevention of early mortality were believed to
be the least likely outcomes of surgery for scoliosis, with 54% to 75% of all surgeons
reporting that these outcomes were “very unlikely”, “extremely unlikely” or “never”.
161
Table 8.10 Surgeons’ Expectations of Outcomes of Surgery for Scoliosis All
SURGEONS Means (Std Dev) Range (n = 24)
NON HSC SURGEONS
Means (Std Dev) Range (n = 20)
HSC SURGEONS Means (Std Dev)
Range (n = 4)
DIFFERENCE
(t – test) p - value
All Expectations
51.53 (12.32)
28.57 – 72.11
54.12 (10.98)
31.29 - 72.11
38.61 (11.58)
28.57 - 55.10
0.0178
Present Expectations
58.18 (11.50)
35.71 – 83.93
60.27 (11.02)
42.86 - 83.93
47.77 (8.42)
35.71 - 55.36
0.0444
Future Expectations
47.44 (14.02)
23.08 – 71.43
50.33 (12.25)
24.18 - 71.43
32.97 (14.93)
23.08 - 54.95
0.0201
Appearance Expectations
89.58 (6.98)
78.57 – 100
90.00 (6.72)
78.57 - 100
87.50 (8.99)
78.57 - 100
0.5252
Pain Expectations
59.13 (17.19)
19.05 – 85.71
60.95 (18.06)
19.05 - 85.71
50.00 (8.25)
38.10 - 57.14
0.2536
Function Expectations
38.93 (16.72)
0 – 71.43
43.14 (13.46)
14.29 - 71.43
17.86 (16.88)
0 - 40.00
0.0032
Psychosocial Expectations
52.98 (17.39)
8.16 – 81.63
54.69 (17.63)
8.16 - 81.63
44.39 (15.31)
24.49 - 61.22
0.2893
Health Expectations
40.03 (19.87)
0 – 85.71
43.75 (17.91)
14.29 - 85.71
21.43 (21.03)
0 - 50.00
0.0371
Analyzed by domain, surgeons’ believed that satisfactory outcomes in the physical
appearance domain had the highest likelihood of occurrence. This was true of all
surgeons. However, surgeons reported a wide range in their perception of the likelihood
of outcomes in all other domains. Surgeons from the Hospital for Sick Children reported
significantly lower expectations than the rest of their Canadian counterparts. There was
also a wide range of expectations among the four HSC surgeons. (See Table 8.10 &
figure 8.11)
162
Surgeons' Expectations of Outcomes of Scoliosis Surgery
0.010.020.030.040.050.060.070.080.090.0
100.0To
tal
Exp
ecta
tions
Pre
sent
Exp
ecta
tions
Futu
reE
xpec
tatio
ns
App
eara
nce
Exp
ecta
tions
Pai
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xpec
tatio
ns
Func
tion
Exp
ecta
tions
Psy
chos
ocia
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xpec
tatio
ns
Hea
lthE
xpec
tatio
ns
Mea
n In
dex
of L
iklih
ood
All Other Canadian Surgeons HSC Surgeons
Figure 8.11 Surgeons’ perception of the likelihood of outcomes of scoliosis surgery with 95% confidence intervals. Comparison of HSC surgeons with all other Canadian surgeons.
8.2.4 Comparison of Patients’, Parent’s and Surgeons’ Expectations of Surgery
Patients were matched with their parents and their treating surgeon. Repeated
measures analysis of variance and paired t- tests were used to compare mean scores of
expectations of (i) Patients, (ii) Parents, and their treating (iii) HSC Surgeons. Analysis
of variance and student t-tests were used when the mean scores of Patients’, Parents’
and ALL Surgeons’ expectations were compared. (See Table 8.11)
163
Table 8.11 Patients’, Parents’ & Surgeons’ Expectations of (Desirable) Outcomes All PATIENTS
Means (Std Dev) Range
ALL PARENTS Means (Std Dev)
Range
ALL SURGEONS Means (Std Dev)
Range
HSC SURGEONSMeans (Std Dev)
Range
All Expectations
54.21 (15.81)
23.81 - 89.80
63.60 (13.17)
34.69 – 90.48
51.53 (12.32)
28.57 – 72.11
38.61 (11.58)
28.57 - 55.10
Present Expectations
55.23 (17.10)
23.21 - 96.43 60.75 (16.96)
23.21 – 100
58.18 (11.50)
35.71 – 83.93
47.77 (8.42)
35.71 - 55.36
Future Expectations
53.59 (17.67)
16.48 - 85.71
65.35 (13.71)
29.67 – 86.81
47.44 (14.02)
23.08 – 71.43
32.97 (14.93)
23.08 - 54.95
Appearance Expectations
84.16 (13.02)
42.86 - 100
89.08 (10.63)
57.14 – 100
89.58 (6.98)
78.57 – 100
87.50 (8.99)
78.57 - 100
Pain Expectations
70.30 (20.94)
0 - 100
66.40 (21.99)
0 – 100 59.13 (17.19)
19.05 – 85.71
50.00 (8.25)
38.10 - 57.14
Function Expectations
52.47 (18.50)
20.00 - 97.14
57.95 (18.46)
8.57 – 91.43
38.93 (16.72)
0 – 71.43
17.86 (16.88)
0 - 40.00
Psychosocial Expectations
40.00 (26.14)
0 - 100.00
57.49 (21.04)
0 – 89.80
52.98 (17.39)
8.16 – 81.63
44.39 (15.31)
24.49 - 61.22
Health Expectations
54.22 (25.78)
0 - 89.29
66.51 (19.46)
0 – 100 40.03 (19.87)
0 – 85.71
21.43 (21.03)
0 - 50.00
Hypothesis 12: Patients’ (pre-treatment) expectations of surgery for scoliosis are
different from parents’ (pre-treatment) expectations of surgery.
Except for the domains of pain and physical appearance, parents believed there was a
greater likelihood (probability) that surgery would result in benefits than their children
reported. Parents’ had significantly greater overall expectations of surgery (p = 0.0005),
expectations of more immediate benefits (present) (p = 0.04), expectations of future
benefits (p = 0.0001), expectations in the psychosocial domain (p < 0.0001) and the
health domain (0.008). (See Table 8.11 & Figure 8.12).
164
Patients' vs Parents' Expectations of Desirable Outcomes of Surgery
0.010.020.030.040.050.060.070.080.090.0
100.0To
tal
Exp
ecta
tions
Pre
sent
Exp
ecta
tions
Futu
reE
xpec
tatio
ns
App
eara
nce
Exp
ecta
tions
Pai
nE
xpec
tatio
ns
Func
tion
Exp
ecta
tions
Psy
chos
ocia
lE
xpec
tatio
ns
Hea
lthE
xpec
tatio
ns
Mea
n In
dex
PATIENTS PARENTS
Patient
vs Parent
- 9.21
p=0.0005
- 5.19
p=0.043
- 11.67
p=0.0001
- 4.45
p=0.063
4.31
p=0.135
- 5.01
p=0.116
- 17.40
p=0.000
- 12.60
p=0.008
Mean Diff. Significance (2-tailed)
Figure 8.12 Mean index of expectations (likelihood) of desirable outcomes is presented for patients and their parents along with 95% confidence intervals. The mean differences for the paired comparisons are provided along with the 2-tailed significance level.
Patients reported similar order of priorities as their parents in terms of expectations of
surgery based on what they felt was the minimal acceptable change (for each item/goal)
following surgery that would be necessary to satisfy them. However, parents once again
reported greater expectations (larger benefits) than their children. The differences were
significant for a number of items. (See Figure 8.13)
165
Patients' vs Parents Expectations of Surgery: Minimal Acceptable Result
0
1
2
3
4
5
Futu
re A
ppea
ranc
e
Futu
re P
ain
Pre
sent
App
eara
nce
Lung
/Hea
rt
Hea
lth
Bra
ce
Futu
re F
unct
ion
Futu
re R
ecre
atio
n
Futu
re S
elf E
stee
m
Mor
talit
y
Pre
sent
Pai
n
Pre
sent
Sel
f Est
eem
Futu
re E
mot
ions
Pre
sent
Fun
ctio
n
Pre
sent
Rec
reat
ion
Pre
sent
Em
otio
n
Pre
gnan
cy/C
hild
birth
Em
ploy
men
t
Futu
re R
elat
ions
hips
Sex
ual F
unct
ion
Pre
sent
Rel
atio
nshi
ps
Leve
l of C
hang
e
PATIENTS PARENTS
Figure 8.13 Patients’ & Parents’ mean level of minimal acceptable change (magnitude of improvement or reduction of future risk) with standard deviations, arranged in decreasing order by patients’ priorities. Threshold level of 3 indicates a “moderate change” (25% - 50%). Significant differences (p-values) are highlighted in red.
Hypothesis 13: Patients’ and Parents’ (pre-treatment) expectations of surgery for
scoliosis are different from surgeons’ (pre-treatment) expectations of surgery.
Patients were compared with their respective surgeons. Patients believed there was a
significantly larger likelihood that surgery would benefit them overall, for more immediate
as well as future benefits. Patients were identical to their surgeons’ with respect to their
psychosocial expectations of surgery. Although expectations were greatest for patients
0.03
0.02 0.01
0.004
0.008
0.001 All < 0.04
Moderate Change (25% - 50%)
166
and surgeons in the physical appearance domain, surgeons reported significantly
greater expectations in the physical appearance domain than their patients (p < 0.0001).
Patients', Parents' & Surgeons' Expectations of Surgery
.00
10.00
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
100.00
TotalExpectations
PresentExpectations
FutureExpectations
AppearanceExpectations
PainExpectations
FunctionExpectations
PsychosocialExpectations
HealthExpectations
Mea
n In
dex
CHILDPARENTSURGEON
Patient
vs Surgeon
22.99
p<0.0001
11.15
p<0.0001
30.27
p<0.0001
- 9.64
p<0.0001
23.9
p<0.0001
47.28
p<0.0001
1.42
p=0.68
46.02
p<0.0001
Mean Diff. Signific. (2-tailed)
Parent vs
Surgeon
31.67
p<0.0001
16.07
p<0.0001
41.26
p<0.0001
- 5.18
p=0.007
18.95
p<0.0001
52.77
p<0.0001
17.93
p<0.0001
57.28
p<0.0001
Mean Diff. Significance (2-tailed)
Figure 8.14 Mean index of expectations (likelihood) of desirable outcomes is presented for patients, parents and their (HSC) surgeons, along with 95% confidence intervals. The mean differences for the paired comparisons are provided along with the 2-tailed significance level.
Parents were compared with their child’s surgeons. Parents believed there was a
significantly larger likelihood that surgery would benefit their child overall, for more
immediate as well as future benefits as well as in all domains except physical
appearance. Although expectations were greatest for parents and surgeons in the
physical appearance domain, surgeons reported significantly greater expectations in the
physical appearance domain than parents (p = 0.007).
167
When patients’ expectations of surgery were compared with those of All Canadian
surgeons, patients’ had significantly larger expectations of surgery in 3 of the 5 domains:
pain expectations (p = 0.02), functional expectations (p = 0.003) and health expectations
(p = 0.019). Surgeons on the other hand had significantly greater psychosocial
expectations of surgery than patients did (p = 0.029). (See Table 8.11)
When parents’ expectations of surgery were compared with expectations of All Canadian
surgeons, parents had significantly greater overall expectations and expectations of
future benefits of surgery than surgeons. Parents also had significantly larger
expectations than surgeons in the domains of functional expectations (p = 0.003) and
health expectations (p = 0.019). Parents had identical expectations as surgeons with
respect to physical appearance expectations. (See Table 8.11)
168
8.3 Expectations of Undesirable Events of Surgery for Scoliosis
Not all outcomes or consequences of surgery are desirable. There are routine expected
consequences (eg. postoperative pain) or unexpected effects (eg. temporary loss of
independence) of a scoliosis operation, in addition to unintended adverse events or
complications, all of which are undesirable. Aim 6 of the thesis was to describe and
compare patients’, parents’ and surgeons’ expectations of undesirable events
associated with surgery for scoliosis. Patients and parents were asked to provide their
estimation of the likelihood of undesirable events or adverse outcomes that they
believed might be associated with surgery. These were rated on an 8-point ordinal
rating scale of probabilities ranging from “Never: 0%” (0) to “Extremely likely: > 95%” (7).
The events were categorized as short term problems (11 items) as well as long term
adverse outcomes (13 items). The surgeons’ perception of the likelihood of undesirable
effects and outcomes of surgery were similarly measured in the Surgeon Questionnaire.
The surgeons were asked to report their perception of the likelihood of each of the same
listed short and long term problems, using the same rating scale.
Means and standard deviations of the patients’ and parents’ and surgeons’ Expectations
of Undesirable Events of Surgery for Scoliosis were determined using the Index of
Expectations for (a) All, (b) Short Term, and (c) Long Term Undesirable Events following
surgery for (i) Patients, (ii) Parents and (iii) Surgeons, respectively.
Patients were compared with their parents and their treating surgeon. Repeated
measures analysis of variance and paired t- tests were used to compare mean scores of
(i) Patients, (ii) Parents, and their treating (iii) Surgeons. Analysis of variance and
student t-tests were used when the mean scores of Patients’, Parents’ and all Surgeons’
expectations were compared.
169
8.3.1 Patients’ Expectations of Undesirable Events
Patients reported a wide range of prior expectations about the likelihood of various
undesirable events associated with surgery. The undesirable events they believed were
most likely (mean out of 7; std dev) were all early or short term events. These were:
i. Post operative pain (5.67; 1.6): 65% (35/54) of children believed that significant
post operative pain was either “very likely” or “extremely likely”;
ii. (Short term) restriction of activities (5.31; 1.43): 46% (24/54) of children believed
that following surgery they were either “very likely” or “extremely likely” to
experience restricted activities;
iii. (Short term) back stiffness (5.19; 1.42): 39% (21/54) patients believed that
following surgery they were either “very likely” or “extremely likely” to experience
short term back stiffness;
iv. (Short term) Unpleasant operative scar (5.04; 1.81): 46% (25/54) of children
believed that they were either “very likely” or “extremely likely” to have an
unappealing scar following surgery.
The remaining listed short term undesirable events were all believed to be unlikely to
occur. (See Table 8.12)
Among the long term undesirable effects only permanent unpleasant scar was
believed to be a > 25% possibility (4.24; 2.05), with 30% of patients (16/54) reporting
that this was either “very likely” or “extremely likely”. The risk (likelihood) of all other
long term consequences or adverse events was believed to be quite small.
(See Table 8.12)
170
Table 8.12 Patients’ Expectations (likelihood) of Undesirable Events following Surgery
Short-Term Undesirable Events
Mean
(Std. Dev.)
Range(0 – 7)
# of Ratings of ‘6’ or ‘7’ (%)
n = 54 i. Post Operative Pain 5.67 (1.60) 0 – 7 35 (65%)
ii. Restricted Physical Activity 5.31 (1.43) 0 – 7 25 (46%)
iii. Early Back Stiffness 5.19 (1.42) 0 – 7 21 (39%)
iv. Unpleasant Scar 5.04 (1.81) 0 – 7 25 (46%)
v. Loss of Independence 2.91 (2.03) 0 – 7 5 (9%)
vi. Abdominal Pain/Nausea/Vomiting 2.81 (1.79) 0 – 6 5 (9%)
vii. Weakness or Sensory Loss 2.80 (1.45) 0 – 7 1
viii. Early Infection 2.56 (1.37) 0 – 6 1
ix. Blood Transfusion 1.59 (1.30) 0 – 6 1
x. Temporary Paralysis 1.39 (0.88) 0 – 5 0
xi. Death 1.04 (0.80) 0 – 3 0
Long-Term
Undesirable Events
Mean
(Std. Dev.)
Range(0 – 7)
# of Ratings of ‘6’ or ‘7’ (%)
n = 54 i. Permanent Scar 4.24 (2.05) 0 – 7 16 (30%)
ii. Future Back Pain 3.94 (1.61) 0 – 7 8 (15%)
iii. Back Stiffness 3.70 (1.72) 0 – 7 7 (13%)
iv. Poor (Unsatisfactory) Correction 3.39 (1.58) 0 – 7 6 (11%)
v. (Long term) Restricted Activities 3.33 (1.55) 0 – 6 4 (7%)
vi. Hardware Problems 2.87 (1.76) 0 – 7 4 (7%)
vii. Re-operation 2.43 (1.54) 0 – 7 2 (4%)
viii. Failure of Fusion 2.20 (1.32) 0 – 5 0
ix. Permanent Sensory/Motor Loss 2.04 (1.48) 0 – 6 2 (4%)
x. Recurrent Deformity 1.91 (1.23) 0 – 5 0
xi. Late Infection 1.63 (1.10) 0 – 4 0
xii. Risks of Transfusion 1.06 (1.19) 0 – 6 1
xiii. Permanent Paralysis 0.91 (0.71) 0 – 3 0
Mean perceived likelihood (out of 7) with standard deviations, range and number of patients who thought these events were either “very likely” or “extremely likely” to occur. These have been arranged in descending order of likelihood.
171
8.3.2 Parents’ Expectations of Undesirable Events
Parents reported a wide range of prior expectations about the likelihood of various
undesirable events associated with surgery for their child. The undesirable events they
believed were most likely (mean out of 7; std dev) were the same early or short term
events believed to be most likely by their children. These were:
i. Post operative pain (6.41; 0.88): 86% (44/51) of parents believed that their
children were either “very likely” or “extremely likely” to experience significant
post operative pain;
ii. (Short term) restriction of activities (5.80; 1.17): 67% (34/51) parents believed
that following surgery their child was either “very likely” or “extremely likely” to
experience restricted activities in the short term;
iii. (Short term) back stiffness (5.65; 1.02): 57% (29/51) patients believed that
following surgery their child was either “very likely” or “extremely likely” to
experience short term back stiffness;
iv. (Short term) Unpleasant operative scar (5.20; 1.56): 47% (24/51) of parents
believed that their child was either “very likely” or “extremely likely” to have an
unappealing scar following surgery.
v. (Short term) Loss of privacy& independence (4.54; 1.69): 29% (15/51) parents
thought that their child was either “very likely” or “extremely likely” to experience
significant loss of privacy and independence for a short period of time following
surgery.
The remaining listed short term undesirable events were all believed to be unlikely to
occur. (See Table 8.13)
Parents believed that the risk (likelihood) of all long term consequences or adverse
events quite small (< 25%). (See Table 8.13)
172
Table 8.13 Parents’ Expectations (likelihood) of Undesirable Events following Surgery
Short-Term Undesirable Events
Mean
(Std. Dev.)
Range(0 – 7)
# of Ratings of ‘6’ or ‘7’ (%)
n = 51 i. Post Operative Pain 6.41 (0.88) 4 – 7 44 (86%)
ii. Restricted Physical Activity 5.80 (1.17) 3 – 7 34 (67%)
iii. Early Back Stiffness 5.65 (1.02) 4 – 7 29 (57%)
iv. Unpleasant Scar 5.20 (1.56) 2 – 7 24 (47%)
v. Loss of Independence 4.54 (1.69) 0 – 7 15 (29%)
vi. Abdominal Pain/Nausea/Vomiting 3.73 (1.83) 0 – 7 10 (20%)
vii. Early Infection 2.63 (1.08) 1 – 6 1
viii. Weakness or Sensory Loss 2.63 (1.28) 0 – 6 1
ix. Blood Transfusion 1.47 (0.92) 0 – 4 0
x. Temporary Paralysis 1.27 (0.72) 0 – 4 0
xi. Death 1.10 (0.54) 0 – 3 0
Long-Term
Undesirable Events
Mean
(Std. Dev.)
Range(0 – 7)
# of Ratings of ‘6’ or ‘7’ (%)
n = 51 i. Permanent Scar 3.80 (1.73) 1 – 7 10 (20%)
ii. Future Back Pain 3.67 (1.44) 1 – 7 6 (12%)
iii. Back Stiffness 3.57 (1.51) 1 – 7 4 (8%)
iv. (Long term) Restricted Activities 3.08 (1.29) 1 – 6 2 (4%)
v. Hardware Problems 3.02 (1.54) 1 – 7 5 (10%)
vi. Poor (Unsatisfactory) Correction 2.96 (0.98) 1 – 5 0
vii. Recurrent Deformity 2.35 (1.49) 0 – 7 3 (6%)
viii. Failure of Fusion 2.31 (1.14) 0 – 6 2 (4%)
ix. Re-operation 2.18 (1.20) 0 – 7 1
x. Permanent Sensory/Motor Loss 1.71 (1.17) 0 – 4 0
xi. Late Infection 1.49 (0.81) 0 – 4 0
xii. Permanent Paralysis 1.08 (0.72) 0 – 4 0
xiii. Risks of Transfusion 1.02 (0.79) 0 – 3 0
Mean perceived likelihood (out of 7) with standard deviations, range and number of parents who thought these events were either “very likely” or “extremely likely” to occur. These have been arranged in descending order of likelihood.
173
8.3.3 Surgeons’ Expectations Undesirable Events
Surgeons reported a wide range of prior expectations about the likelihood of some of the
undesirable events associated with surgery for scoliosis. The undesirable events they
believed were most likely (mean out of 7; std dev) were:
i. Post operative pain (5.63; 1.50): Based on their experience, 46% (11/24) of all
surgeons surveyed, reported that their patients were either “very likely” or
“extremely likely” to experience significant post operative pain;
ii. (Short term) restriction of activities (5.08; 1.67): 29% (7/24) of surgeons reported
that following surgery their patients were either “very likely” or “extremely likely”
to experience restricted activities in the short term;
iii. (Short term) back stiffness (4.50; 1.25): 57% (29/51) of surgeons reported that
following surgery their patients either “very likely” or “extremely likely” to
experience short term back stiffness.
The remaining listed short term undesirable events were all believed to be unlikely to
occur. (See Table 8.14)
Among the long term undesirable effects or adverse events associated with surgery,
surgeons reported that future back pain (4.17; 1.37) and back stiffness (4.17; 1.43) were
somewhat (25% -50%) likely consequences of surgery for scoliosis. (See Table 8.14)
Surgeons from the Hospital for Sick Children were identical to the other Canadian
scoliosis surgeons in their reports of the most likely undesirable events associated with
surgery. Unlike their counterparts, however, they had greater agreement (less
variability) among themselves with all 4 surgeons (100%) reporting that significant post
operative pain and (short term) restriction of activities were “extremely likely”. HSC
surgeons also reported a higher probability (50% - 75%) of long term back stiffness
174
(5.25; 2.06) and future back pain (5.00; 1.41) for their patients, than other Canadian
surgeons.
Table 8.14 All Surgeons’ Expectations (likelihood) of Undesirable Events of Surgery
Short-Term Undesirable Events
Mean
(Std. Dev.)
Range(0 – 7)
# of Ratings of ‘6’ or ‘7’ (%)
n = 24 i. Post Operative Pain 5.63 (1.50) 3 – 7 11 (46%)
ii. Restricted Physical Activity 5.08 (1.67) 2 – 7 7 (29%)
iii. Early Stiffness 4.50 (1.25) 3 – 7 2 (8%)
iv. Unpleasant Scar 3.96 (1.46) 1 – 7 4 (17%)
v. Abdominal Pain/Nausea/Vomiting 3.21 (1.56) 1 – 6 2 (8%)
vi. Loss of Independence 2.91 (1.56) 1 – 6 1
vii. Weakness or Sensory Loss 2.29 (1.81) 1 – 7 2 (8%)
viii. Early Infection 1.88 (0.85) 1 – 4 0
ix. Blood Transfusion 1.67 (0.82) 1 – 3 0
x. Temporary Paralysis 1.33 (0.82) 1 – 4 0
xi. Death 1.00 (0.51) 0 – 3 0
Long-Term
Undesirable Events
Mean
(Std. Dev.)
Range(0 – 7)
# of Ratings of ‘6’ or ‘7’ (%)
n = 24 i. Future Back Pain 4.17 (1.43) 2 – 7 3 (12%)
ii. Back Stiffness 4.17 (1.37) 2 – 7 2 (8%)
iii. (Long term) Restricted Activities 3.25 (1.59) 1 – 7 0
iv. Permanent Scar 3.17 (1.27) 1 – 6 1
v. Poor (Unsatisfactory) Correction 3.04 (0.75) 2 – 5 0
vi. Recurrent Deformity 2.25 (0.74) 1 – 4 0
vii. Re-operation 2.08 (0.78) 1 – 4 0
viii. Failure of Fusion 1.92 (0.93) 1 – 5 0
ix. Hardware Problems 1.83 (0.92) 1 – 5 0
x. Late Infection 1.58 (0.83) 1 – 4 0
xi. Risks of Transfusion 1.29 (0.62) 1 – 3 0
xii. Permanent Sensory Loss 1.25 (0.61) 1 – 3 0
xiii. Permanent Paralysis 1.13 (0.45) 1 – 3 0
Mean perceived likelihood (out of 7) with standard deviations, range and number of surgeons who thought these events were either “very likely” or “extremely likely” to occur. These have been arranged in descending order of likelihood.
175
8.3.4 Comparison of Patients’, Parent’s and Surgeons’ Expectations of
Undesirable Events of Surgery
Patients’ expectations were compared with their parents expectations (paired t-tests),
and patients’ and parents’ expectations were compared with surgeons’ expectations
(ANOVA and t-tests). (See Table 8.15)
Table 8.15 Patients’, Parents’ & Surgeons’ Expectations of Undesirable Events of Surgery
Index of Expectations
Patients’
Expectations (n=54)
Parents’
Expectations(n = 51)
All Surgeons’ Expectations
n = 24
HSC Surgeons’ Expectations
n = 4 All
Undesirable Events
41.63 (12.01)
19.64 - 75.00
43.15 (7.70)
30.36 - 63.10
38.37 (8.36)
25.00 - 53.57 41.96 (4.67)
35.71 - 45.83
Short Term Index
47.14 (12.37)
20.78 - 83.12
52.38 (7.75)
35.06 - 66.23
43.29 (10.14)
24.68 - 62.34 48.70 (3.09)
44.16 - 50.65
Long Term Index
36.98 (13.78)
7.69 - 71.43
35.34 (10.63)
16.48 - 65.93
34.20 (8.84)
19.78 - 53.85 36.26 (6.59)
28.57 - 41.76
Short Term Minor
64.11 (16.85)
33.33 - 97.62
74.37 (12.67)
45.24 - 97.62
59.92 (14.18)
30.95 - 88.10 73.21 (7.87)
61.90 - 78.57
Long Term Minor
48.34 (17.04)
14.29 - 89.80
45.58 (14.08)
24.49 - 79.59
43.96 (11.72)
22.45 - 63.27 48.47 (10.46)
36.73 - 59.18
All Minor
55.62 (14.93)
30.77 - 86.81
58.87 (10.57)
41.76 - 80.22
51.33 (10.94)
30.77 - 68.13 59.89 (8.49)
48.35 - 68.13
Short Term Major
26.77 (10.80)
2.86 - 74.29
25.99 (7.65)
8.57 - 48.57
23.33 (9.81)
14.29 - 45.71 19.85 (2.82)
17.65 - 23.53
Long Term Major
23.72 (12.21)
0.00 - 64.29
23.39 (8.92)
2.38 - 50.00
22.82 (7.29)
14.29 - 42.86 22.02 (3.00)
19.05 - 26.19
All Major
25.11 (10.69)
1.30 - 68.83
24.57 (7.03)
10.39 - 42.86
23.05 (7.76)
15.58 - 44.16 20.78 (1.84)
19.48 - 23.38
Hypothesis 14: Patients’ (pre-treatment) expectations of undesirable events of surgery
for scoliosis are different from Parents’ expectations of undesirable events of surgery.
176
Parents believed that there was a greater likelihood of short term undesirable events
than their children (p = 0.001), but this was only for short term minor undesirable effects
(p <0.0005) (See Tables 8.12 & 8.13). Parents and their children had very similar
perceptions of the likelihood of all long term (minor and major), all major (short and long
term) undesirable effects. (See Table 8.15 & Figure 8.15)
Patients', Parents' & Surgeons' Expectations of Undesirable Events
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
80.0
90.0
100.0
All
Shor
tTe
rm In
dex
All
Long
Term
Inde
x
All
Und
esira
ble
Out
com
es
Shor
t Ter
mM
inor
Long
Ter
mM
inor
Shor
t Ter
mM
ajor
Long
Ter
mM
ajor
Mea
n In
dex
Scor
es
PATIENTS PARENTS HSC SURGEONS
Patient
vs Parent
- 5.55
0.001
1.46
0.51
- 1.75
0.29
- 10.64
<0.0005
2.52
0.38
0.56
0.77
0.23
0.89
Mean Paired Diff.
Sig. (2-tailed)
Patient vs
Surgeon
- 1.56
0.80
0.72
0.92
- 0.33
0.96
- 9.10
0.29
- 0.13
0.99
6.92
0.21
1.70
0.784
Mean Diff. Sig.
(2-tailed) Parent
vs Surgeon
3.68
0.353
- 0.92
0.865
1.19
0.76
1.26
0.86
- 2.89
0.69
6.14
0.12
1.37
0.763
Mean Dif. Sig.
(2-tailed) Figure 8.15 Patients’, parents’ and surgeons’ mean index of expectations of undesirable events along with 95% confidence intervals. The mean differences of the paired comparisons are provided along with the 2-tailed significance level.
177
Hypothesis 15: Patients’ and Parents’ (pre-treatment) undesirable expectations of
surgery for scoliosis are different from Surgeons’ undesirable expectations of surgery.
Neither patients nor their parents were significantly different from their surgeons in their
perception of the likelihood of different undesirable events. HSC surgeons reported a
greater likelihood of short term minor effects than their patients, but this difference did
not reach statistical significance (p = 0.29).
8.4 Summary
In this chapter, we explored the prior expectations of patients and parents both about
their perception of the natural history of idiopathic scoliosis and the outcomes (both
desirable and undesirable) of surgery for scoliosis. Expectations were defined as the
subjective estimation of the likelihood that a given event or outcome would occur. In
addition, prior expectations about the outcomes of surgery were also estimated as the
minimal acceptable change following surgery that patients (and parents) would need to
be satisfied. Patients’ expectations were compared with their parents. Furthermore,
parents also reported their perception of their child’s responses, to determine how well
parents were aware of their children’s expectations. Surgeons’ expectations (likelihood)
of the natural history of scoliosis and of the desirable and undesirable outcomes of
scoliosis surgery were measured and compared with patients’ and parents’ expectations.
Patients and parents had a wide range of beliefs about the likelihood of occurrence all
the listed items. Although, patients and parents shared similar beliefs (rank order of
likelihood) about the natural history of scoliosis, parents consistently believed that there
was a significantly higher probability for most items. Parents seemed to know that their
children perceived these risks to be lower than them and could accurately predict their
children’s responses. Except in their estimation of the likelihood of deterioration of
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physical appearance and future emotional problems, surgeons reported significantly
lower estimates of the risk of all other issues than their patients. In particular, patients
and parents believe there is a much higher likelihood of future back pain, future
restriction of physical activities, sports and recreation, future general health risks
associated with untreated scoliosis, than their respective surgeons believe. Of interest,
there was wide variation in surgeons’ estimates of the likelihood of various future
problems, suggesting that there is poor agreement among surgeons about the natural
history of scoliosis for individual patients. The mismatch between patients’ (and
parents’) and surgeons' overall perceptions of the natural history may be due to
surgeons’ own uncertainty about the natural history and/or that surgeons’
communication of their understanding of the natural history of scoliosis to their
patients/parents is not effective.
Patients and parents shared similar beliefs about which items were most likely to be
benefited by surgery. However, parents in general had significantly higher expectations
than their children, reporting a higher likelihood (probability) that surgery would
accomplish most of these goals/items. Similarly, patients and parents shared similar
priorities in their expectations of desirable outcomes based on the minimal change they
would find acceptable to be satisfied with surgery. However, once again parents’ levels
of minimal acceptable change were significantly greater than their children’s levels.
Except in the domain of physical appearance expectations, and the psychosocial
domains, patients and parents had far higher expectations of surgery than their
surgeons. Patients and parent have much higher expectations of surgery in the
domains of functional, pain and health benefits than their surgeons. Surgeons were in
close agreement only about the likelihood of benefit in the domain of physical
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appearance. For all other domains, Canadian scoliosis surgeons, including the HSC
surgeons reported a wide range in their perception of the likelihood of various outcomes.
In general, patients, their parents and their surgeons have similar perceptions about the
likelihood of undesirable effects of surgery. They all believed that short term minor
effects were most likely, while short term major adverse events and most long term
undesirable effects (minor and major) are not very likely consequences of surgery.
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Chapter 9
DISCUSSION
9.1 Patient, Parental & Surgeon Priorities in Idiopathic Scoliosis: Conclusions
Concerns about Scoliosis
In Chapter 6, we reported that patients and parents expressed a wide range of prior
concerns about many of the perceived present and future consequences of scoliosis.
The issues that patients (on average) were most concerned about, were shared by most
patients. Similarly the most significant concerns expressed by parents were also shared
by most parents. However, at least some proportion (up to 25%) of patients (and
parents) expressed a high level of concern for issues that other patients and parents did
not. When compared with their own children, parents expressed a larger number of
major concerns than patients, and the magnitude of their concerns about different effects
of scoliosis were consistently higher than their children in every domain. Patients and
their parents had the greatest concerns about the effects of scoliosis on physical
appearance and the risk of future back pain. Patients (and parents) also expressed a
high level of concern about risk of restriction of future activities. Parents expressed a
high level of concern about the effects of scoliosis on their child’s emotional well-being
and self esteem, general health and future lung/heart problems. These issues did
not seem to concern patients much. When asked to report what they thought their
children’s responses might be, parents seemed to recognize that their children’s
responses would be different from theirs, but they were also remarkably perceptive of
the direction as well as the magnitude of these differences.
Surgeons reported consistently fewer and far less serious concerns about the effects of
scoliosis than either patients or their parents in all domains. This is not surprising
despite the fact that each surgeon was asked to assume the role of a parent of a child
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with scoliosis needing an operation, when responding to the questions about concerns
about scoliosis. This simulation is unlikely to capture the real magnitude of concerns a
surgeon might feel if his or her daughter truly faced the situation. Nevertheless, we felt
that this would certainly capture the items and domains of most significant concern to
surgeons who had the benefit of their knowledge and experience about the natural
history of scoliosis. Surprisingly, surgeons seemed to differ from each other in the level
of concern for many of the issues. The most significant concerns expressed by
surgeons (as parents) related to effects of scoliosis on physical appearance, which
reassuringly were the top concerns of patients and their parents. Surgeons’ next highest
concerns related to potential psychosocial effects of scoliosis. Surgeons did not have
much concern about the risk of future back pain or restriction of functional activities,
which were major concerns of both patients and parents.
Concerns of patients (or parents) about scoliosis and their perception of the present and
future consequences of the condition (in contrast to the treatment) have hitherto not
been reported. In their survey of patients with idiopathic scoliosis (and their parents)
Bridwell et al set out to assess their concerns about surgery, their reasons for having
surgery and their expectations of treatment (Bridwell, Shufflebarger et al. 2000). In this
survey, one question asked “if your child/the patient had to spend the rest of his/her life
with his/her bone and muscle condition as it is right now, how would you feel about it?”
The responses were rated on a 5 point ordinal scale from “very satisfied” (1) to “very
dissatisfied” (5). On the basis of the mean patient score (4.05) and the parent score
(4.36), the authors concluded that “the data suggest both patients and parents were
concerned about the present disease, but that parents were more concerned than the
patient”. While this question suggests that patients and parents are “dissatisfied” with
the current status, neither this question nor the survey overall actually tells us anything
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about “concerns” about scoliosis, or what specific concerns patients and parents might
have about the condition.
Natural History of Scoliosis
In the conceptual framework that was developed for this study, concerns about potential
consequences of a condition (idiopathic scoliosis) are related to the expectations about
the natural history of the untreated condition, expressed as the subjective perception
(belief) of the likelihood (probability) of future consequences. Expectations about the
natural history of scoliosis were reported in Chapter 8.
We found that patients and parents had a wide range of beliefs about the likelihood of
occurrence all the listed items. Although, patients and parents shared similar beliefs
(rank order of likelihood) about the natural history of scoliosis, parents consistently
believed that there was a significantly higher probability for most items if their child’s
scoliosis was not treated. This might explain parents’ greater levels of concern than
their children. Just as was found with concerns about scoliosis, parents seemed to
recognize that their children perceived these risks to be lower than them. They were
also able to accurately predict their children’s responses.
Except in their estimation of the likelihood of deterioration of physical appearance and
future emotional problems, surgeons reported significantly lower estimates of the risk
of all other issues than their patients. In particular, patients and parents believe there is
a much higher likelihood of future back pain, future restriction of physical activities,
sports and recreation, future general health risks associated with untreated scoliosis,
than their respective surgeons believe. Once again, there was wide variation in
surgeons’ estimates of the likelihood of various future problems, which might explain the
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similar variation found about the level of concern surgeons had for these issues. This
suggests that there is a relatively modest agreement among Canadian scoliosis
surgeons about the natural history of scoliosis for individual patients. The mismatch
between patients’ (and parents’) and surgeons' overall perceptions of the natural history
may be due to surgeons’ own uncertainty about the natural history and/or that surgeons’
communication of their understanding of the natural history of scoliosis to their
patients/parents is not effective in influencing patients’ or parents’ perceptions, except in
the domain of physical appearance. Consequently, in the domain where surgeons are
universally in agreement, patients’ and parents’ expectations of the natural history are
well aligned with their surgeons’.
This is the first study that has systematically explored the (perceptions about) the natural
history of scoliosis both from the perspective of patients and their parents, but also from
those of their surgeons, whose perspective presumably plays a significant, if not the
most important influence on patients’ and parents’ perceptions.
Desires (wishes) and Goals of Surgery
In Chapter 7, we reported what patients and parents want from the surgery for scoliosis
and how they ranked these desires or wishes in the order of importance, and compared
these with their surgeons’ goals or reasons for scoliosis surgery.
Although patients report a wide range in the strength of desires for each of the goals of
surgery, their strongest desire of surgery and the most important reason for undergoing
surgery was to prevent deterioration of, and/or improve current physical
appearance. Their parents were identical in this regard. The five most important
reasons for surgery reported by parents were the same as the five most important
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reasons for surgery reported by patients. Although, parents had very similar desires or
wishes as their children, the strength of their desires was greater than their children
across all domains and items/goals. However, parents seemed to recognize this
difference and were able to predict their children’s most important desires as well as the
strength of these desires. This was consistent with the finding of parents’ greater
concerns about scoliosis than their children and their knowledge of this difference.
Canadian scoliosis surgeons also identified physical appearance as the most frequent
reason and most important reason for recommending surgery for idiopathic scoliosis.
Prevention of future back pain was one of the top five reasons for surgery for patients,
parents and Canadian scoliosis surgeons but not at all for surgeons from the Hospital for
Sick Children. Surgeons from the Hospital for Sick Children reported similar importance
rankings as other Canadian surgeons, but unlike their counterparts, did not rank
prevention of future back pain as an important goal for surgery. Instead they
prioritized prevention of future and/or improvement of current emotional problems
among their top five most important goals for surgery, which were not in patients’ or
parents’ top list of priorities. While Canadian scoliosis surgeons are in strong agreement
about the most important reason for scoliosis surgery, they do not agree among
themselves about other reasons, which may reflect their differences of opinion about
their perceptions of the natural history of idiopathic scoliosis. Patients and parents
express some desires or reasons for surgery which their surgeons do not believe are
goals of surgery.
Our findings are in direct contrast with those reported by Bunch and Chapman, who
explored patient preferences in decision making for surgical treatment of idiopathic
scoliosis (Bunch and Chapman 1985). They used a multiple-attribute utility model to
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assess patient preferences for two (now obsolete) surgical techniques, by measuring
utilities for specifically selected attributes: the nature of after care; the risk of reoperation;
risk of nerve damage; and the percentage of curve correction; in a group of patients, one
or both of their parents, a group or orthotists and orthopaedic surgeons. In considering
which type of surgery to have, avoiding major post-operative complications such as
nerve damage and reoperation were deemed to be more important than the percentage
of curve correction achievable or the need for post-operative immobilization. The four
groups were similar in the rating of the relative importance of the four attributes. The
authors concluded that the values of surgeons, patients and family members are virtually
identical and that surgeons could serve as a good proxy for the “informed” patient.
At best, this study tells us what patients don’t want from surgery (major complications),
and little about what they do want or their reasons for surgery in the first place. The
analysis was framed in the constrained context of the four selected attributes, which
were chosen by the surgeons, not by patients. The assumption that patients would
value these chosen attributes as the most important ones to consider in making their
decision imposes the surgeons’ perspective on decision making and ignores the factors
that patients might wish to consider. For instance, we know that patients do not evaluate
their outcomes based on radiographic criteria, much less the percentage of curve
correction (Haher, Merola et al. 1995)(D'Andrea, Betz et al. 2000)(Theologis, Jefferson
et al. 1993). Assumptions about the “informed patient” or inferences about the ability of
surgeons to serve as a good “proxy” cannot be made in this study. On the contrary, our
results strongly refute such a conclusion.
In a more contemporary study that explores these issues, Bridwell et al explicitly set out
to assess patients and parents reasons for having surgery as one of the objectives
(Bridwell, Shufflebarger et al. 2000). This was a cross-sectional pre-operative survey of
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91 patients with idiopathic scoliosis (and their parents) recruited from four different
centres in the United States. The participants completed a self-administered
questionnaire. Respondents were asked to rank a list of 14 items in the order of most to
least important reason for having surgery. The 14 items were distributed over five
categories: cosmetic correction (6); reducing present pain (1); future consequences (3);
return to function (3); number of levels fuses (1). The top two ranked categories for both
parents and their children were future consequences (progression of deformity;
cardiopulmonary function; and future pain), and cosmetic correction. Individual
patients tended to have different reasons for surgery than their parents, but these
differences were very small (Bridwell, Shufflebarger et al. 2000).
This was the first published study that explored patients’ and parents’ desires (reasons
for) of surgery for idiopathic scoliosis (Bridwell, Shufflebarger et al. 2000). A large
number of participants were surveyed in four different centres. This study also had the
advantage of being conducted in a cohort of patients prior to their upcoming surgery for
scoliosis. However, this study had some limitations. It was not based on any theoretical
framework. No conceptual or operational definitions were provided. The development
or validation of the questionnaire was not described. The source of items in the
instrument was not clear, and it was not apparent whether patient or parental input was
considered at all to ensure that issues relevant to them were included in the
questionnaire. For instance there were no items pertaining to the psychosocial domain
(emotions, self-esteem, social interactions/friendships/relationships etc.) The wording of
many items used technical jargon (eg. “trunk shift”, “anterior chest asymmetry”, “cardio-
pulmonary dysfunction”, “rib hump”, “lumbar hump”, etc.), suggesting that the items were
derived from surgeons. Such language might result in items being misinterpreted or not
understood at all. In fact, the authors reported that some incomplete or unexpected
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responses suggested that respondents “did not seem to have a full understanding of the
questions asked”. If that was indeed the case it should not be assumed that completed
responses reflect “a full understanding of the questions asked”, since the questionnaire
was self-administered. Notwithstanding these limitations, this was an excellent study
and the most important reasons for surgery identified by patients and parents pre-
operatively were similar to those identified in our study, where participants were asked to
report their prior desires (reasons for surgery) after their operation had been completed.
Expectations of Surgery
In Chapter 8, we reported the prior expectations of patients and parents about the
outcomes (both desirable and undesirable) of surgery for scoliosis. Expectations were
defined as the subjective estimation of the likelihood that a given outcome would occur.
Expectations about the outcomes of surgery were also estimated as the minimal
acceptable change following surgery that patients (and parents) would need to be
satisfied.
Patients and parents shared similar beliefs about which items were most likely to be
benefited by surgery. Consistent with their expectations based on perceived likelihood,
patients and parents shared the same set of expectations of desirable outcomes based
on the minimal change they would find acceptable to be satisfied with surgery.
However, parents had significantly higher expectations than their children, reporting a
higher likelihood (probability) that surgery would accomplish most of these goals/items
and significantly greater levels of minimal acceptable change than their children. Except
in the domains of physical appearance expectations and the psychosocial
expectations, patients and parents had far greater expectations of surgery than their
surgeons. Patients and parent have much higher expectations of surgery in the
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domains of functional, pain and health benefits than their surgeons. Surgeons were
in close agreement only about the likelihood of benefit in the domain of physical
appearance. For all other domains, Canadian scoliosis surgeons, including the HSC
surgeons reported a wide range in their perception of the likelihood of various outcomes.
In the study by Bridwell et al, expectations of surgery were measured with the question:
“...... As a result of your child’s/the patient’s treatment, you expect your child/the patient
(to have … or be able to..)” for 9 items: pain relief; look better; feel better about
him/herself; sleep more comfortably; do more activities at home; do more at school;
more play or recreational activities; more sports; be free from pain or disability as an
adult. Items were rated on a 5 point scale from “Definitely Yes” to Definitely Not”
(Bridwell, Shufflebarger et al. 2000). They found that for both patients and parents,
freedom from pain and disability as an adult was the highest “expectation” followed
by to look better. They also found that “parents were significantly more demanding
than patients about having more substantial pain relief, looking better, feeling better
about self, and sleeping more comfortably”. They concluded that “this reflects a greater
concern about the pathologic process or the disease among parents than patients.”
Although the differences were statistically significant, the absolute differences were very
small and possibly meaningless. In fact there was not much difference in the mean
ranks of all items. This is not surprising, because respondents might be reluctant to rate
any items as “definitely not”. Furthermore, any conclusions about parents’ or patients’
concerns about the pathologic process or the disease are speculative because this was
not addressed in the questionnaire. The question was framed to ask “what expectations
do you have for your child’s/the patient’s treatment? ...” No definition of expectation was
provided, and the interpretation of “expect” in the question could be variously interpreted:
as what one wants; what’s most likely to occur (expectancy); or what’s minimal
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acceptable result or a demand (value). Based on the authors’ statements
(“..demanding..”) above, they used the term “expectations” to represent a value rather
than an expectancy (probability).
In our study, expectations about desirable outcomes of surgery were operationalized in
two ways (expectancy and a value) and the questions constructed explicitly to reflect the
different approaches, and all items and domains derived from the initial open ended
interviews of patient and parent that were used to develop the questionnaire.
Concerns and Expectations about Undesirable Effects of Surgery
In Chapter 6, concerns about undesirable effects of surgery were described. This is in
contrast to their expectations (perceived likelihood) about the undesirable effects of
surgery, which were reported in Chapter 8. One can have a high (or low) level of
concern for a particular event because of, or despite, one’s perception of the likelihood
of that event.
Patients and parents report a wide range (from “not at all concerned” to extremely
concerned”) in their level of concern for nearly all short and long term undesirable effects
or adverse events associated with surgery. Patients’ biggest short term concerns were
about pain after surgery, unpleasant scar, restricted physical activities and back
stiffness. In general, patients were less concerned about long term effects than about
short term possibilities. The biggest concerns for the long term were about unpleasant
scar, rods or hooks causing problems and permanent back stiffness.
In general, parents reported a larger number of serious concerns as well as greater level
of concerns for most undesirable effects of surgery than their children. This included the
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same short term effects that concerned children most but also significant worries about
the risk of temporary paralysis and death. Parents’ concerns about long term
undesirable effects of surgery were also greater than those of their children but these
differences were smaller. Parents, once again, were aware that they had greater
concerns about surgery than their children did, and were able to predict quite accurately
what level of concerns their children would report.
In general, patients, their parents and their surgeons had similar perceptions about the
likelihood of undesirable effects of surgery. They all believed that short term minor
effects were most likely, while short term major adverse events and most long term
undesirable effects (minor and major) are not very likely consequences of surgery. In
this context patients’, parents’ and their surgeons’ expectations were well aligned.
In the study by Bridwell et al, one of the objectives was to assess patients’ and parents’
concerns about surgery (Bridwell, Shufflebarger et al. 2000). This issue was addressed
by a single question which was worded: “Please rate your biggest concern about your
child’s/patient’s surgery, with 1 being the most important and 6 being the least important”
This was followed by a list of 6 items to be ranked from most to least important:
“neurologic deficit”; “wound infection”; “pseudoarthrosis”; “immediate post-operative
pain”; “adjustments needed in the patient and family life for the first year after surgery”;
“the location and the appearance of the surgical scar”. Neurologic deficit and
pseudoarthrosis ranked the most important concern by patients and parents. These
two issues may be the most “important” concern but may not be the most common or
biggest concern. In our study we explored patients’ and parents’ concerns about
surgery by asking them to report both the level of concern for each undesirable effect as
well as their perception of the likelihood of each of these effects. The level of concern
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for each undesirable effect did not seem to be related to the perceived likelihood of the
event.
9.2 Limitations
The most significant limitation of this work is the cross-sectional design of the study.
Patients (and parents) were interviewed two years after they had undergone surgery for
scoliosis and were asked to report the concerns, desires and expectations they had
experienced prior to surgery. This raises two important issues.
First is the issue of recall. Participants were enrolled in a randomized trial comparing
two different instrumentation systems for surgical correction of their scoliosis, the final
outcome of which was being assessed 2 years post surgery. Both as part of routine
clinical care and because of their participation in the trial, these patients received regular
follow-up. They had all lived with their scoliosis for some time prior to the decision to
proceed with surgery, so would likely have had sufficient time to develop a set of
priorities (concerns desires and expectations) during the time leading up to their
operation. The decision to proceed to surgery is a significant event and the time leading
up to the actual operation, reinforced by the process of informed consent and the various
questionnaires administered at baseline as part of the trial, might have reinforced some
of their thoughts in these matters, making them more easy to recall at the time of the
interview. During the interviews, which were all conducted by the principal investigator,
neither patients nor their parents at any time indicated that they had difficulty recalling
their experiences two years prior.
The second issue is one of hindsight bias. Our study captures patients’ (and parents’)
perception of their prior priorities at one point in time. Priorities can change over time
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and also be influenced by the outcome. It has been suggested that the strong
relationship between expectations and satisfaction may be an artifact of methodology,
because asking patients after their experiences might lead to a post-hoc rationalization
of their prior beliefs (Linder-Pelz 1982). Expectations change in the light of accumulated
experience, and satisfaction will be reported in respect of these continually changing
experiential states (Locker and Dunt 1978). Hindsight expectations are consistently
biased in the direction of perceived occurrence or outcome (Christensen-Szalanski and
Willham 1991). On the other hand, although pre-treatment expectations are
independent of, and uncontaminated by, subsequent events, they may in fact be less
relevant than expectations that are formed (or persist) during or after the intervention
(hindsight expectations) (Kravitz 1996). If prior expectations (and their fulfillment)
contribute to the formulation of satisfaction, then the recollection of prior expectations at
the time that satisfaction is being measured is all that matters. It has been shown that
hindsight, rather than foresight expectations (i.e., expectations formed prior to surgery)
are the more potent determinant of satisfaction, since at the time of assessing
satisfaction, the unbiased foresight expectations are no longer available to the patient
(Zwick, Pieters et al. 1995). Longitudinal studies are necessary to establish how patient
priorities emerge and are modified during the process of care (Thompson and Sunol
1995). Clearly, in our study we have no way of determining what patient and parental
priorities would have been had they been interviewed pre-operatively, or for that matter,
what they would be if interviewed again in the future. It is reassuring that the study by
Bridwell et al, in which patients’ reasons for surgery and their expectations of surgery
were measured preoperatively, the issues of highest priority were similar to those
identified in hindsight by our study (Bridwell, Shufflebarger et al. 2000).
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The reliability and validity of the questionnaires used for the structured interview was not
formally established. However, the questionnaire was developed using a theoretical
framework, and the questions framed on the basis of explicit definitions for the various
priorities of interest. Face and content validity can be inferred because the
questionnaire was developed directly from patient and parental input from open ended
interviews followed by iterative process of testing multiple preliminary versions of the
questionnaire and pilot testing of the final questionnaire prior to implementation. The
surgeon version was developed concurrently. Reliability (test-retest) of responses was
not conducted. This problem was minimized by the nature of the in depth interview. The
face to face interviews were conducted in the participants’ homes by the same
interviewer (principal investigator). This allowed the interviewer to ensure that the intent
of each question was being interpreted uniformly by all participants. The close
correlation between parents’ perceptions of their children’s responses with patients’
actual responses, despite the fact that patients and parents were interviewed separately
and blinded to the others’ responses, provides another measure of reliability.
9.3 Summary of Findings & Significance of the Research
There is very little known about the priorities of children (and their parents) with chronic
disease in general. We chose to study this in adolescents with idiopathic scoliosis
because we felt it would be an appropriate and convenient model to explore these
issues. The patients are old enough to articulate their priorities, and yet not old enough
to make decisions about treatment independently of their parents. Prior to this work, we
knew little about how adolescents with scoliosis viewed their condition, what they
believed were its consequences, what their concerns were about the diagnosis and its
treatment and how these concerns might influence what they wanted and expected from
treatment. The natural history of untreated scoliosis and long term outcomes of
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treatment were uncertain. The goals of treatment of idiopathic scoliosis are often
preventive, and therefore decisions are made in the absence of any experienced (or
even perceived) problem at the time, in order to avoid potential future problems that the
patient (or parents) may never come to experience. Under circumstances of uncertainty,
an understanding and consideration of patients’ priorities and their preferences was all
the more important. Orthopaedic surgeons had a superficial understanding of patients’
and parents’ priorities. Knowledge of patients’ concerns, what they want, what they
expect and how their priorities differ from their parents’ would provide important insight
into hitherto unknown patient preferences, which in turn could influence decision making,
guide the process of informed consent and facilitate the evaluation of outcomes that
matter most to patients. This could improve the quality of care they received and
contribute to increased patient satisfaction. Little attention had been paid to the
preconditions and possible determinants of patient satisfaction, such as patient priorities
and preferences.
The following is a summary of our findings and their implications:
1. Adolescents and their parents expressed a wide range of beliefs about their
perception of the likelihood of future events related to scoliosis if left untreated (natural
history). Although individual adolescents shared similar types of beliefs about the natural
history with their respective parents, parents consistently assigned significantly higher
probabilities for future consequences than their children. Except in their estimation of the
likelihood of deterioration of physical appearance and future emotional problems,
surgeons reported far lower estimates of the risk of all future events than either patients
or parents. But surgeons themselves did not seem to agree about the natural history of
scoliosis, and many of their individual perceptions did not match the published literature
on the natural history. Such variations in surgeons’ perceptions about the natural history
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either implies that there is still much uncertainty or disagreement about the natural
history and/or that surgeons have not paid much attention to the literature on the subject.
This has significant implications. Presumably the surgeon’s perception of the natural
history for an individual patient and the communication of that information have a
significant, if not pre-eminent, influence on the patient’s and parent’s perceptions of the
natural history, and the concerns that ensue. The surgeon’s perception of the natural
history is (or ought to be) the predominant factor that informs the surgeon’s decision to
recommend surgery and (when combined with the patient’s and parent’s desires and
expectations) the decision to proceed with that recommendation. The wide range of
beliefs about the probability of future consequences (natural history) might explain the
similar wide range in the levels of concern about those consequences.
2. Adolescents and their parents expressed a wide range of concerns about the
perceived consequences/natural history of idiopathic scoliosis. Although the most
significant concerns expressed were shared by most adolescents and their parents, up
to 25% of adolescents (and parents) expressed high levels of concern for issues that
other adolescents (and parents) did not. Consequently, one must not assume that all
patients (or all parents) are alike and share similar concerns. Individual priorities are
different. Parents have greater and different sets of concerns than their adolescents, but
remarkably, parents seem to be able to predict their children’s concerns. Parents’ own
concerns are not good proxies for their children’s concerns, but parents might be reliable
sources of information regarding their children’s concerns when explicitly asked about
them.
Surgeons (assuming the role of parents) uniformly reported far fewer and significantly
lower levels of concern about the perceived consequences/natural history of idiopathic
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scoliosis than parents of children with idiopathic scoliosis. With the exception of effect of
scoliosis on physical appearance, surgeons did not share the same types of concerns
with either adolescents or their parents or with themselves. The knowledge that
surgeons underestimate the number and extent of concerns of their patients and
patients’ parents, ought to spur surgeons to expand their discussion with patients and
their parents to address these concerns. This gap between surgeons’ perceptions and
those of their patients and their parents could be narrowed and/or managed by
a. Educating surgeons about the existence of these potential differences
b. Encouraging patients and parents to voice their concerns so that these may
be appropriately validated or alleviated using evidence based information
regarding the natural history and prognosis.
c. Providing appropriate support/counseling to help patients and parents better
cope with their concerns.
3. Patients and parents wanted the same things from surgery for idiopathic
scoliosis. Parents expressed stronger desires for these goals than their children.
Improving (or preventing future deterioration of) physical appearance was the primary
reason for surgery for patients, their parents and surgeons. However, other important
reasons identified by both patients and their parents were quite different from the goals
of surgery articulated by surgeons, and surgeons themselves did not agree with each
other about the most important goals beyond the primary objective relating to physical
appearance. Consequently, adolescents and their parents express important desires or
reasons for surgery, which their surgeons do not believe are the goals of surgery.
Similarly, adolescents and their parents expressed their highest expectations (perceived
likelihood) for the same set of (desirable) outcomes, but parents had consistently higher
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levels of expectations for these outcomes than their children. Except in the domains of
physical appearance and psychosocial expectations, adolescents and their parents
expressed far greater expectations of surgery than their surgeons, especially in the
functional, pain and health benefit domains. Surgeons themselves could not agree in
their individual perceptions of the likelihood of various desirable outcomes.
These findings strongly refute the notion that surgeons can be a good proxy for the
“informed patient” contradicting what has been previously suggested (Bunch and
Chapman 1985). Surgeons should be aware of the potential for this mismatch and
should actively explore with their patients whether there is indeed a gap between
patients’/parents’ desires and expectations, and surgeons’ goals and expectations, and
try to align these goals and expectations lest this mismatch leads to disappointment with
the outcomes of surgery.
4. Patients’ concerns about the undesirable effects of surgery are focused primarily
on short term post-operative experiences. Parents reported a larger number of serious
concerns as well as a greater level of concern for each of these than their children.
Parents were particularly concerned about the risk of paralysis or death, even though
they perceived (rightly) that the likelihood of these complications was quite small.
Interestingly, the perceived likelihood of undesirable effects of surgery (probability of
risk) were similar for adolescents, their parents and their surgeons. This (rare) alignment
of perspectives probably reflects:
a. The quality and consistency of the literature about complication rates.
b. The nature of the informed consent process, which tends to emphasize the
risks and complications rather than the reasons (indications) for surgery, and
desires and expectations of surgery.
198
In conclusion, we found that, although on average, patients and their parents had similar
sets of priorities, there were significant differences in priorities among patients and
among parents as well as differences between patients and their parents. This is
important because it tells us that not all patients (or parents) have the same priorities.
Not only are parents’ priorities distinct from those of their children, patients’ and parents’
priorities are not always concordant with surgeons’ goals and expectations. Surgeons
need to communicate more effectively with their patients about the reasons (or goals) of
treatment and expectations (likely outcomes) of treatment. Such communication might
be facilitated using questionnaires pre-operatively that explicitly explore these priorities.
The questionnaire developed for this research has the potential of being adapted to
serve this purpose. Such a questionnaire will enable surgeons to identify any mismatch
in priorities and allow them to explore these with their patients (and their parents) both to
influence decision making and to ensure that surgeons’ goals and expectations of
surgery are aligned with patients’ or parents’ reasons and expectations. The
questionnaire might provide the opportunity for patients and their parents to voice
hitherto unexpressed desires and expectations, which can be appropriately addressed
as those that are realizable, unrealistic, unlikely or uncertain to occur. Such a discussion
is likely to enhance the informed consent process. Surgeons seem to be more effective
at communicating the likelihood of the risks and complications of surgery (the
undesirable effects) as this is, perhaps unintentionally, the major emphasis of the
process of informed consent.
9.4 Future Research
The questionnaires developed for this study also included sections about patients’ (and
parents’) current (residual) concerns about scoliosis after surgery, current perception of
the likelihood of various issues now that surgery was done, the perceived magnitude of
199
change actually experienced for each of the items, as well as the level of satisfaction
with the change in each item. In addition, patients completed other outcome measures
as part of their assessment in the randomized trial. These data will allow us to test
empirically the relationships hypothesized in the conceptual framework that was
developed for this study. We intend to study the relative and collective contributions to
the formulation of satisfaction with surgery by the alleviation of concerns; the decrease
(or change) in the perception of the likelihood of future risks (perceived alteration of the
natural history of scoliosis by the surgery); the magnitude of change experienced for
each desired item/goal; the gap between this change and the magnitude of change that
was desired and expected; in addition to the functional and quality of life outcome scores
and radiographic measurement of change.
This model has the potential to provide a template to measure concerns, desires and
expectations for other conditions both in children and adults, and a framework to design
disease & treatment specific measures of satisfaction.
200
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208
Post-Operative Survey of Idiopathic Scoliois
Patients (2 years after surgery)
209
I have read and understood the above statement. My questions have been answered.
I am willing to participate in the interview. I understand that I can withdraw from participation at any time. I realize
that the interview will be kept strictly confidential with access restricted only to the researchers. My identity will not
be revealed in any published or presented results.
In the event of any other questions or concerns I can contact Dr. Unni Narayanan at (416) 813-7654 Extn:3196 or
Sam Donaldson at (416) 813-7654 Extn: 3156.
Name & Signature of Patient: Date
Name & Signature of Mother/guardian:
Name & Signature of Father/guardian:
Name & Signature of Physician/Researcher obtaining consent:
PATIENT CONSENT FORM
210
Before Surgery Not at all Hardly Slightly Somewhat Very Extremely Don’t
Because of my scoliosis, I was Concerned Concerned Concerned Concerned Concerned Concerned Remember
----------------- concerned about my: 0 1 2 3 4 5 DR
1. Physical appearance at the time 0 1 2 3 4 5 DR
2. Physical appearance in the future 0 1 2 3 4 5 DR
3. Back pain at the time 0 1 2 3 4 5 DR
4. Risk of back pain in the future 0 1 2 3 4 5 DR
5. Physical activity at the time 0 1 2 3 4 5 DR
6. Future physical activity 0 1 2 3 4 5 DR
7. Sports/recreation at the time 0 1 2 3 4 5 DR
8. Future participation sports/recreation 0 1 2 3 4 5 DR
9. Having to wear a brace 0 1 2 3 4 5 DR
10. Emotional/psychological well being 0 1 2 3 4 5 DR
11. Future emotional/psychological well being
0 1 2 3 4 5 DR
12. Self-esteem at the time (the way I felt about myself)
0 1 2 3 4 5 DR
13. Self esteem in the future 0 1 2 3 4 5 DR
14. Friendships/relationships at the time 0 1 2 3 4 5 DR
15. Future relationships/marriage 0 1 2 3 4 5 DR
16. Pregnancy/childbirth 0 1 2 3 4 5 DR
17. Sexual function 0 1 2 3 4 5 DR
18. Employment/career 0 1 2 3 4 5 DR
19. Risk of future lung and heart problems 0 1 2 3 4 5 DR
20. Risk of future general health problems 0 1 2 3 4 5 DR
21. Having a shorter life 0 1 2 3 4 5 DR
22. Other issue: 0 1 2 3 4 5 DR
23. Other issue: 0 1 2 3 4 5 DR
Patients with adolescent idiopathic scoliosis report many concerns regarding their condition. Before your surgery, how concerned were you about the following issues? Please circle the number/response that best applies.
1A. Patient’s concerns regarding scoliosis (Previous concerns)
211
After Surgery Not at all Hardly Slightly Somewhat Very Extremely
Because of my scoliosis, I am now Concerned Concerned Concerned Concerned Concerned Concerned
____________ concerned about my: 0 1 2 3 4 5
1. Physical appearance at present 0 1 2 3 4 5
2. Physical appearance in the future 0 1 2 3 4 5
3. Back pain at present 0 1 2 3 4 5
4. Risk of back pain in the future 0 1 2 3 4 5
5. Physical activity at present 0 1 2 3 4 5
6. Future physical activity 0 1 2 3 4 5
7. Sports/recreation at present 0 1 2 3 4 5
8. Future participation sports/recreation 0 1 2 3 4 5
9. Having to wear a brace 0 1 2 3 4 5
10. Emotional/psychological well being now 0 1 2 3 4 5
11. Future emotional/psychological well being 0 1 2 3 4 5
12. Self-esteem at present (the way I feel about myself)
0 1 2 3 4 5
13. Self esteem in the future 0 1 2 3 4 5
14. Friendships/relationships at present 0 1 2 3 4 5
15. Future relationships/marriage 0 1 2 3 4 5
16. Pregnancy/childbirth 0 1 2 3 4 5
17. Sexual function 0 1 2 3 4 5
18. Employment/career 0 1 2 3 4 5
19. Risk of future lung and heart problems 0 1 2 3 4 5
20. Risk of future general health problems 0 1 2 3 4 5
21. Having a shorter life 0 1 2 3 4 5
22. Other issue: 0 1 2 3 4 5
23. Other issue: 0 1 2 3 4 5
Patients with adolescent idiopathic scoliosis report many concerns regarding their condition. Since your surgery, how concerned are you about the following issues now? Please circle the number/response that best applies.
1B. Patient’s concerns regarding scoliosis (Present concerns)
212
Not a Very Very Don’t
Before surgery, Problem Minimal Mild Moderate Severe Severe Remember
my problems due to scoliosis were: 0 1 2 3 4 5 DR
1. Effect on my physical appearance 0 1 2 3 4 5 DR
i. Back looked curved or crooked 0 1 2 3 4 5 DR
ii. Bump in the back or prominent ribs 0 1 2 3 4 5 DR
iii. Shoulders not at same level 0 1 2 3 4 5 DR
iv. Shoulder blades asymmetric 0 1 2 3 4 5 DR
v. Chest or breasts not symmetrical 0 1 2 3 4 5 DR
vi. Waistline is asymmetrical or
“hips” are not balanced
0 1 2 3 4 5 DR
vii. Body leans to one side (trunk imbalance) 0 1 2 3 4 5 DR
viii. Other aspects: 0 1 2 3 4 5 DR
2. Back pain 0 1 2 3 4 5 DR
3. Effect on my physical activities 0 1 2 3 4 5 DR
4. Effect on my sports/recreation 0 1 2 3 4 5 DR
5. Wearing a brace 0 1 2 3 4 5 DR
6. Problems with my emotions 0 1 2 3 4 5 DR
7. Effect on my self esteem (the way I felt about myself)
0 1 2 3 4 5 DR
8. Effect on my relationships/friendships
0 1 2 3 4 5 DR
9. Other problems: 0 1 2 3 4 5 DR
10. Other problems: 0 1 2 3 4 5 DR
Patients experience certain problems or difficulties that they believe are because of their scoliosis. Before surgery, how much of a problem was each of the following issues to you? Please circle the number/response that best applies.
2A. Patient’s previous problems (Before surgery)
213
Not a Very Very
Problem Minimal Mild Moderate Severe Severe
Now, my problems due to scoliosis are: 0 1 2 3 4 5
1. Effect on my physical appearance 0 1 2 3 4 5
i. Back looks curved or crooked 0 1 2 3 4 5
ii. Bump in the back or prominent ribs 0 1 2 3 4 5
iii. Shoulders not at same level 0 1 2 3 4 5
iv. Shoulder blades asymmetric 0 1 2 3 4 5
v. Chest or breasts not symmetrical 0 1 2 3 4 5
vi. Waistline is asymmetrical or
“hips” are not balanced
0 1 2 3 4 5
vii. Body leans to one side (trunk imbalance) 0 1 2 3 4 5
viii. Other aspects: 0 1 2 3 4 5
2. Back pain 0 1 2 3 4 5
3. Effect on my physical activities 0 1 2 3 4 5
4. Effect on my sports/recreation 0 1 2 3 4 5
5. Wearing a brace 0 1 2 3 4 5
6. Problems with my emotions 0 1 2 3 4 5
7. Effect on my self esteem (the way I felt about myself)
0 1 2 3 4 5
8. Effect on my relationships/friendships
0 1 2 3 4 5
9. Other problems: 0 1 2 3 4 5
10. Other problems: 0 1 2 3 4 5
Since surgery, how much of a problem is each of the following issues to you now?
Please circle the number/response that best applies.
2B. Patient’s present problems (After surgery)
214
Extremely Very Very Extremely
If I had not had surgery, the problems Unlikely Unlikely Unlikely Possible Likely Likely Likely Don’t
I might have had in the future Never (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) Know
because of scoliosis are: 0 1 2 3 4 5 6 7 DK
1. Physical appearance might worsen in the future
0 1 2 3 4 5 6 7 DK
2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK
3. Restricted physical activities in the future
0 1 2 3 4 5 6 7 DK
4. Restricted participation in sports/recreation in the future
0 1 2 3 4 5 6 7 DK
5. Emotional or psychological problems in the future
0 1 2 3 4 5 6 7 DK
6. Self esteem might be affected (the way I feel about myself)
0 1 2 3 4 5 6 7 DK
7. Problems with relationships/marriage
0 1 2 3 4 5 6 7 DK
8. Problems with pregnancy/childbirth
0 1 2 3 4 5 6 7 DK
9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK
10. Employment/career might be affected
0 1 2 3 4 5 6 7 DK
11. Lung and heart problems in the future
0 1 2 3 4 5 6 7 DK
12. General health might be affected in the future
0 1 2 3 4 5 6 7 DK
13. Shorter life 0 1 2 3 4 5 6 7 DK
14. Other problems: 0 1 2 3 4 5 6 7 DK
15. Other problems: 0 1 2 3 4 5 6 7 DK
3A. Likelihood of future problems: Patient’s perspective (Before surgery)
Patients express many concerns for future problems that they believe might occur if their scoliosis is not treated. Before surgery, what did you think was the likelihood that this problem would occur if your scoliosis was not treated? Please circle the number/response that best applies.
215
Extremely Very Very Extremely
After surgery, the problems Unlikely Unlikely Unlikely Possible Likely Likely Likely Don’t
I might still have in the future Never (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) Know
because of scoliosis are: 0 1 2 3 4 5 6 7 DK
1. Physical appearance might worsen in the future
0 1 2 3 4 5 6 7 DK
2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK
3. Restricted physical activities in the future
0 1 2 3 4 5 6 7 DK
4. Restricted participation in sports/recreation in the future
0 1 2 3 4 5 6 7 DK
5. Emotional or psychological problems in the future
0 1 2 3 4 5 6 7 DK
6. Self esteem might be affected (the way I feel about myself)
0 1 2 3 4 5 6 7 DK
7. Problems with relationships/marriage
0 1 2 3 4 5 6 7 DK
8. Problems with pregnancy/childbirth
0 1 2 3 4 5 6 7 DK
9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK
10. Employment/career might be affected
0 1 2 3 4 5 6 7 DK
11. Lung and heart problems in the future
0 1 2 3 4 5 6 7 DK
12. General health might be affected in the future
0 1 2 3 4 5 6 7 DK
13. Shorter life 0 1 2 3 4 5 6 7 DK
14. Other problems: 0 1 2 3 4 5 6 7 DK
15. Other problems: 0 1 2 3 4 5 6 7 DK
As a result of your surgery, what do you now believe is the likelihood that each of these problems might happen in the future? Please circle the number/response that best applies.
3B. Likelihood of future problems: Patient’s perspective (After surgery)
216
Very Not Very A little Somewhat Strongly Strongly Don’t at all Little Desired Desired Desired Desired Remember
What I hoped or wished to get from surgery was: 0 1 2 3 4 5 DR
1. To improve my physical appearance 0 1 2 3 4 5 DR
2. To prevent worsening of physical appearance 0 1 2 3 4 5 DR
3. To decrease my back pain 0 1 2 3 4 5 DR
4. To prevent future back pain 0 1 2 3 4 5 DR
5. To improve my physical activity 0 1 2 3 4 5 DR
6. To prevent restriction of future physical activity
0 1 2 3 4 5 DR
7. To improve my participation in sports/recreation
0 1 2 3 4 5 DR
8. To prevent restriction of future participation in sports/recreation
0 1 2 3 4 5 DR
9. To stop wearing a brace 0 1 2 3 4 5 DR
10. To improve my emotional well being 0 1 2 3 4 5 DR
11. To prevent future emotional and/or psychological problems
0 1 2 3 4 5 DR
12. To improve my self-esteem (the way I felt about myself)
0 1 2 3 4 5 DR
13. To prevent loss of self esteem in the future 0 1 2 3 4 5 DR
14. To improve my friendships and/or relationships
0 1 2 3 4 5 DR
15. To prevent problems with future relationships and/or marriage
0 1 2 3 4 5 DR
16. To prevent problems with pregnancy and/or childbirth
0 1 2 3 4 5 DR
17. To prevent problems with sexual function 0 1 2 3 4 5 DR
18. To improve employment and/or career opportunities
0 1 2 3 4 5 DR
19. To prevent future lung and heart problems 0 1 2 3 4 5 DR
20. To prevent future general health problems 0 1 2 3 4 5 DR
21. To prevent early mortality (death) 0 1 2 3 4 5 DR
22. Other goal: 0 1 2 3 4 5 DR
23. Other goal: 0 1 2 3 4 5 DR
4A. Reasons for undergoing surgery: Patient’s hopes, wishes or desires
Patients report several reasons for why they underwent surgery for scoliosis.
How much did you wish or desire that surgery would accomplish each of the following goals? Please circle the number/response that best applies.
217
Patient’s ranking of top 10 wishes from surgery (from 1 to 10)
1. To improve my physical appearance
2. To prevent worsening of physical appearance
3. To decrease my back pain
4. To prevent future back pain
5. To improve my physical activity
6. To prevent restriction of future physical activity
7. To improve my participation in sports/recreation
8. To prevent restriction of future participation in sports/recreation
9. To stop wearing a brace
10. To improve my emotional well being
11. To prevent future emotional and/or psychological problems
12. To improve my self-esteem (the way I felt about myself)
13. To prevent loss of self esteem in the future
14. To improve my friendships and/or relationships
15. To prevent problems with future relationships and/or marriage
16. To prevent problems with pregnancy and/or childbirth
17. To prevent problems with sexual function
18. To improve employment and/or career opportunities
19. To prevent future lung and heart problems
20. To prevent future general health problems
21. To prevent early mortality (death)
22. Other goal:
23. Other goal:
4B. Reasons for undergoing surgery: Patient’s hopes, wishes or desires
Patients report several reasons for why they underwent surgery for scoliosis.
Rank your top 10 wishes from surgery, in order of most to least important reason.
218
Extremely Very Very Extremely
Not a Unlikely Unlikely Unlikely Possible Likely Likely Likely Don’t
Before my surgery, I thought Problem (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) Know
surgery was likely to: 0 1 2 3 4 5 6 7 DK 1. Improve my physical appearance 0 1 2 3 4 5 6 7 DK
2. Prevent worsening of my physical appearance
0 1 2 3 4 5 6 7 DK
3. Decrease my back pain 0 1 2 3 4 5 6 7 DK
4. Prevent future back pain 0 1 2 3 4 5 6 7 DK
5. Improve my physical activity 0 1 2 3 4 5 6 7 DK
6. Prevent restriction of future physical activity
0 1 2 3 4 5 6 7 DK
7. Improve my participation in sports/recreation
0 1 2 3 4 5 6 7 DK
8. Prevent restriction of future participation in sports/recreation
0 1 2 3 4 5 6 7 DK
9. Eliminate need for a brace 0 1 2 3 4 5 6 7 DK
10. Improve my emotional well being 0 1 2 3 4 5 6 7 DK
11. Prevent future emotional and/or psychological problems
0 1 2 3 4 5 6 7 DK
12. Improve my self-esteem 0 1 2 3 4 5 6 7 DK
13. Prevent loss of self esteem in the future
0 1 2 3 4 5 6 7 DK
14. Improve my friendships and/or relationships
0 1 2 3 4 5 6 7 DK
15. Prevent problems with future relationships and/or marriage
0 1 2 3 4 5 6 7 DK
16. Prevent problems with pregnancy and/or childbirth
0 1 2 3 4 5 6 7 DK
17. Prevent problems with sexual function
0 1 2 3 4 5 6 7 DK
18. Improve my employment and/or career opportunities
0 1 2 3 4 5 6 7 DK
19. Prevent future lung and heart problems
0 1 2 3 4 5 6 7 DK
20. Prevent future general health problems
0 1 2 3 4 5 6 7 DK
21. Prevent early mortality (death) 0 1 2 3 4 5 6 7 DK
22. Other goal: 0 1 2 3 4 5 6 7 DK
23. Other goal: 0 1 2 3 4 5 6 7 DK
5A. Patient’s expectations of surgery: likelihood of results
Patient’s report several reasons for undergoing surgery for scoliosis. These are listed below.
How likely did you think surgery would accomplish each of these goals?
Please circle the number/response that best applies.
219
No Very Very
Change Small Small Moderate Large Large
The minimum amount of change or reduction (< 5%) (5%-25%) (25%-50%) (50%-75%) (75%-100%)
of future risk that I would have accepted: 0 1 2 3 4 5
1. Improvement of my physical appearance 0 1 2 3 4 5
2. Prevention of worse of physical appearance 0 1 2 3 4 5
3. Reduction of my back pain 0 1 2 3 4 5
4. Prevention of future back pain 0 1 2 3 4 5
5. Improvement of my physical activity 0 1 2 3 4 5
6. Prevention of future physical activity restriction
0 1 2 3 4 5
7. Improvement in my participation in sports 0 1 2 3 4 5
8. Prevention of future restriction in sports participation
0 1 2 3 4 5
9. Prevention of brace wear 0 1 2 3 4 5
10. Improvement in my emotional and/or psychological well being
0 1 2 3 4 5
11. Prevention of future emotional and/or psychological problems
0 1 2 3 4 5
12. Improvement of my self-esteem 0 1 2 3 4 5
13. Prevention of future loss of self esteem 0 1 2 3 4 5
14. Improvement of my friendships and/or relationships
0 1 2 3 4 5
15. Prevention of problems with future relationships and/or marriage
0 1 2 3 4 5
16. Prevention of problems with pregnancy and/or childbirth
0 1 2 3 4 5
17. Prevention of problems with sexual function 0 1 2 3 4 5
18. Improvement in my employment and/or career opportunities
0 1 2 3 4 5
19. Prevention of future lung and heart problems 0 1 2 3 4 5
20. Prevention of future general health problems 0 1 2 3 4 5
21. Prevention of early mortality (death) 0 1 2 3 4 5
22. Other outcome: 0 1 2 3 4 5
23. Other outcome: 0 1 2 3 4 5
5B. Patient’s expectations of surgery: magnitude of results expected
For each goal, what was the minimum change (improvement or reduction of future risk) that you would have accepted to be satisfied?
Please circle the number/response that best applies.
220
Not at all Hardly Slightly Somewhat Very Extremely Don’t
Concerned Concerned Concerned Concerned Concerned Concerned Remember Short term problems & risks (up to 3 months) 0 1 2 3 4 5 DR
1. Pain after surgery 0 1 2 3 4 5 DR
2. Unpleasant scar 0 1 2 3 4 5 DR
3. Back stiffness 0 1 2 3 4 5 DR
4. Restricted physical activities 0 1 2 3 4 5 DR
5. Infection (early) 0 1 2 3 4 5 DR
6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 DR
7. Loss of privacy and independence 0 1 2 3 4 5 DR
8. Risks of blood transfusion 0 1 2 3 4 5 DR
9. Sensory changes or muscle weakness (short term)
0 1 2 3 4 5 DR
10. Paralysis (temporary) 0 1 2 3 4 5 DR
11. Death 0 1 2 3 4 5 DR
12. Other concerns: 0 1 2 3 4 5 DR
Long term risks (1 year after surgery to rest of your life)
1. Back pain in the future 0 1 2 3 4 5 DR
2. Unpleasant scar 0 1 2 3 4 5 DR
3. Partial or unsatisfactory correction 0 1 2 3 4 5 DR
4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 DR
5. Restricted physical activities 0 1 2 3 4 5 DR
6. Infection (late) 0 1 2 3 4 5 DR
7. Rods/hooks might cause problems 0 1 2 3 4 5 DR
8. Spine might not fuse properly 0 1 2 3 4 5 DR
9. Deformity might recur or worsen 0 1 2 3 4 5 DR
10. Risks of blood transfusion 0 1 2 3 4 5 DR
11. Sensory changes or muscle weakness (permanent)
0 1 2 3 4 5 DR
12. Paralysis (permanent) 0 1 2 3 4 5 DR
13. Need for another operation 0 1 2 3 4 5 DR
14. Other concerns: 0 1 2 3 4 5 DR
Patients express many concerns regarding the adverse effects and risks of scoliosis surgery.
Before surgery, how concerned were you about surgery resulting in any of these adverse outcomes?
Please circle the number/response that best applies.
6A. Patient’s concerns regarding scoliosis surgery: magnitude of concern
221
Extremely Very Very Extremely Don’t
Unlikely Unlikely Unlikely Possible Likely Likely Likely Remember
Likelihood of short term problems & risks Never (<1%) (1-5%) (5-25%) (25-50%) (50-75%) (75-95%) (95-100%) (up to 3 months after surgery) 0 1 2 3 4 5 6 7 DR
1. Pain after surgery 0 1 2 3 4 5 6 7 DR
2. Unpleasant scar 0 1 2 3 4 5 6 7 DR
3. Back stiffness 0 1 2 3 4 5 6 7 DR
4. Restricted physical activities 0 1 2 3 4 5 6 7 DR
5. Infection 0 1 2 3 4 5 6 7 DR
6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 6 7 DR
7. Loss of privacy and independence 0 1 2 3 4 5 6 7 DR
8. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR
9. Sensory changes or muscle weakness (short term)
0 1 2 3 4 5 6 7 DR
10. Paralysis (temporary) 0 1 2 3 4 5 6 7 DR
11. Death 0 1 2 3 4 5 6 7 DR
12. Other concerns: 0 1 2 3 4 5 6 7 DR
Likelihood of long term risks (1 year after surgery to rest of your life)
1. Back pain in the future 0 1 2 3 4 5 6 7 DR
2. Unpleasant scar 0 1 2 3 4 5 6 7 DR
3. Partial or unsatisfactory correction 0 1 2 3 4 5 6 7 DR
4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 6 7 DR
5. Restricted physical activities 0 1 2 3 4 5 6 7 DR
6. Infection (late) 0 1 2 3 4 5 6 7 DR
7. Rods/hooks might cause problems 0 1 2 3 4 5 6 7 DR
8. Spine might not fuse properly 0 1 2 3 4 5 6 7 DR
9. Deformity might recur or worsen 0 1 2 3 4 5 6 7 DR
10. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR
11. Sensory changes or muscle weakness (permanent)
0 1 2 3 4 5 6 7 DR
12. Paralysis (permanent) 0 1 2 3 4 5 6 7 DR
13. Need for another operation 0 1 2 3 4 5 6 7 DR
14. Other concerns: 0 1 2 3 4 5 6 7 DR
Patients express many concerns regarding the adverse effects and risks of scoliosis surgery.
Before surgery, how likely did you believe that surgery could result in any of these outcomes?
Please circle the number/response that best applies.
6B. Patient’s concerns regarding scoliosis surgery: likelihood of risks
222
Much Moderately Slightly No Slightly Moderately Much Worse Worse Worse Change Better Better Better
As a results of surgery my __________ is: -3 -2 -1 0 +1 +2 +3 1. My physical appearance -3 -2 -1 0 +1 +2 +3
i. Straightened or decreased curve of my back -3 -2 -1 0 +1 +2 +3
ii. Decreased the prominence or bump in the back -3 -2 -1 0 +1 +2 +3
iii. Leveled my shoulders -3 -2 -1 0 +1 +2 +3
iv. Corrected shoulder blade symmetry -3 -2 -1 0 +1 +2 +3
v. Corrected the chest/breast asymmetry -3 -2 -1 0 +1 +2 +3
vi. Balanced the waistline or “hips” -3 -2 -1 0 +1 +2 +3
vii. Corrected the leaning of the body to one side -3 -2 -1 0 +1 +2 +3
viii. My height -3 -2 -1 0 +1 +2 +3
ix. Other aspects: -3 -2 -1 0 +1 +2 +3
2. Back pain -3 -2 -1 0 +1 +2 +3
3. My level of physical activity -3 -2 -1 0 +1 +2 +3
4. My participation in sports -3 -2 -1 0 +1 +2 +3
5. Brace wear -3 -2 -1 0 +1 +2 +3
6. My emotional well being -3 -2 -1 0 +1 +2 +3
7. My self-esteem (the way I feel about myself) -3 -2 -1 0 +1 +2 +3
8. My friendships/relationships -3 -2 -1 0 +1 +2 +3
As a result of my surgery, my Much Moderately Slightly No Slightly Moderately Much risk of future problems is now: Worse Worse Worse Change Better Better Better 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3
2. Future back pain -3 -2 -1 0 +1 +2 +3
3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3
4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3
5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3
6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3
7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3
8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3
9. Problems with sexual function -3 -2 -1 0 +1 +2 +3
10. Problems with employment/career opportunities
-3 -2 -1 0 +1 +2 +3
11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3
12. Problems with general health -3 -2 -1 0 +1 +2 +3
13. Shorter life span -3 -2 -1 0 +1 +2 +3
7A. Results of surgery: magnitude of change experiencedAs a result of your surgery, how much change have you experienced for each characteristic listed? Please circle the number/response that best applies.
How much, do you believe, has surgery reduced the risk of future problems?
223
Neither dissatisfied
Very Moderately Slightly nor Slightly Moderately Very As a result of my surgery, Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfied I am ___________ with my: -3 -2 -1 0 +1 +2 +3
1. My physical appearance -3 -2 -1 0 +1 +2 +3
i. Straightened or decreased curve of my back -3 -2 -1 0 +1 +2 +3
ii. Decreased the prominence or bump in the back -3 -2 -1 0 +1 +2 +3
iii. Leveled my shoulders -3 -2 -1 0 +1 +2 +3
iv. Corrected shoulder blade symmetry -3 -2 -1 0 +1 +2 +3
v. Corrected the chest/breast asymmetry -3 -2 -1 0 +1 +2 +3
vi. Balanced the waistline or “hips” -3 -2 -1 0 +1 +2 +3
vii. Corrected the leaning of the body to one side -3 -2 -1 0 +1 +2 +3
viii. Increased my height -3 -2 -1 0 +1 +2 +3
ix. Other aspects: -3 -2 -1 0 +1 +2 +3
2. Back pain -3 -2 -1 0 +1 +2 +3
3. My level of physical activity -3 -2 -1 0 +1 +2 +3
4. My participation in sports -3 -2 -1 0 +1 +2 +3
5. Brace wear -3 -2 -1 0 +1 +2 +3
6. My emotional well being -3 -2 -1 0 +1 +2 +3
7. My self-esteem (the way I feel about myself) -3 -2 -1 0 +1 +2 +3
8. My friendships/relationships -3 -2 -1 0 +1 +2 +3
Neither dissatisfied
Very Moderately Slightly nor Slightly Moderately Very As a result of surgery I am ______________ Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfiedwith the reduction of risk for future problem -3 -2 -1 0 +1 +2 +3 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3
2. Future back pain -3 -2 -1 0 +1 +2 +3
3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3
4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3
5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3
6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3
7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3
8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3
9. Problems with sexual function -3 -2 -1 0 +1 +2 +3
10. Problems with employment/career opportunities
-3 -2 -1 0 +1 +2 +3
11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3
12. Problems with general health -3 -2 -1 0 +1 +2 +3
13. Shorter life span -3 -2 -1 0 +1 +2 +3
7B. Satisfaction with results: Patient’s perspective
How satisfied are you with each of the results? Please circle the number/response that best applies.
224
1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
THANK YOU VERY MUCH FOR YOUR TIME AND PATIENCE COMPLETING THIS SURVEY !
8. Outcomes of surgery: any surprises?
What, if any, surprises or unexpected events have you experienced following surgery?
Please list both pleasant and unpleasant surprises that you have experienced.
225
Post-Operative Survey of Idiopathic Scoliosis Patients:
Parental Questionnaire (2 years after surgery)
226
We have read and understood the above statement. Our questions have been answered.
We are willing to participate in the interview. We understand that we can withdraw from participation at any time.
We realize that the interview will be kept strictly confidential with access restricted only to the researchers. Our
identity will not be revealed in any published or presented results.
In the event of any other questions or concerns we can contact Dr. Unni Narayanan at (416) 813-7654 Extn:3196
or Sam Donaldson at (416) 813-7654 Extn: 3156.
Name of Patient: Date
Name & Signature of Mother/guardian:
Name & Signature of Father/guardian:
Name & Signature of Physician/Researcher obtaining consent:
PARENT CONSENT FORM
227
Before surgery
Because of our child’s Not at all Hardly Slightly Somewhat Very Extremely Don’t Child’s
scoliosis we/I were _________ Concerned Concerned Concerned Concerned Concerned Concerned Remember Rating*
concerned about her/his: 0 1 2 3 4 5 DR (0 to 5, DK)
1. Physical appearance at the time 0 1 2 3 4 5 DR
2. Physical appearance in the future 0 1 2 3 4 5 DR
3. Back pain at the time 0 1 2 3 4 5 DR
4. Risk of back pain in the future 0 1 2 3 4 5 DR
5. Physical activity at the time 0 1 2 3 4 5 DR
6. Future physical activity 0 1 2 3 4 5 DR
7. Sports/recreation at the time 0 1 2 3 4 5 DR
8. Future sports/recreation 0 1 2 3 4 5 DR
9. Having to wear a brace 0 1 2 3 4 5 DR
10. Emotional/psychological well being 0 1 2 3 4 5 DR
11. Future emotional/psychological well being
0 1 2 3 4 5 DR
12. Self-esteem at the time (the way I felt about myself)
0 1 2 3 4 5 DR
13. Self esteem in the future 0 1 2 3 4 5 DR
14. Friendships/relationships at the time
0 1 2 3 4 5 DR
15. Future relationships/marriage 0 1 2 3 4 5 DR
16. Pregnancy/childbirth 0 1 2 3 4 5 DR
17. Sexual function 0 1 2 3 4 5 DR
18. Employment/career 0 1 2 3 4 5 DR
19. Risk of future lung and heart problems
0 1 2 3 4 5 DR
20. Future general health problems 0 1 2 3 4 5 DR
21. Having a shorter life 0 1 2 3 4 5 DR
22. Other issue: 0 1 2 3 4 5 DR
23. Other issue: 0 1 2 3 4 5 DR
Parents of patients with scoliosis report many concerns regarding their child’s condition. Before your child’s surgery, how concerned were you about the following issues? *How concerned do you think your child* was regarding each of these issues? Not all concerned (0); Hardly concerned (1); Slightly concerned(2); Somewhat concerned(3); Very concerned(4); Extremely concerned(5); Don’t remember (DR); Don’t know (DK) Please circle the number/response that best applies.
IA. Parents’ concerns regarding scoliosis (Previous concerns)
228
After surgery
Because of our child’s Not at all Hardly Slightly Somewhat Very Extremely No Child’s
scoliosis we are now _________ Concerned Concerned Concerned Concerned Concerned Concerned Change Rating*
concerned about her/his: 0 1 2 3 4 5 NC (0 to 5, DK)
1. Physical appearance at present 0 1 2 3 4 5 NC
2. Physical appearance in the future 0 1 2 3 4 5 NC
3. Back pain at present 0 1 2 3 4 5 NC
4. Risk of back pain in the future 0 1 2 3 4 5 NC
5. Physical activity at present 0 1 2 3 4 5 NC
6. Future physical activity 0 1 2 3 4 5 NC
7. Sports/recreation at present 0 1 2 3 4 5 NC
8. Future sports/recreation 0 1 2 3 4 5 NC
9. Having to wear a brace 0 1 2 3 4 5 NC
10. Emotional/psychological well being 0 1 2 3 4 5 NC
11. Future emotional/psychological well being
0 1 2 3 4 5 NC
12. Self-esteem at present 0 1 2 3 4 5 NC
13. Self esteem in the future 0 1 2 3 4 5 NC
14. Friendships/relationships at present
0 1 2 3 4 5 NC
15. Future relationships/marriage 0 1 2 3 4 5 NC
16. Pregnancy/childbirth 0 1 2 3 4 5 NC
17. Sexual function 0 1 2 3 4 5 NC
18. Employment/career 0 1 2 3 4 5 NC
19. Risk of future lung and heart problems
0 1 2 3 4 5 NC
20. Future general health problems 0 1 2 3 4 5 NC
21. Having a shorter life 0 1 2 3 4 5 NC
22. Other issue: 0 1 2 3 4 5 NC
23. Other issue: 0 1 2 3 4 5 NC
Parents of patients with scoliosis report many concerns regarding their child’s condition. Since your child’s surgery, how concerned are you about the following issues now? *How concerned do you think your child* is regarding each of these issues now? Not all concerned (0); Hardly concerned (1); Slightly concerned(2); Somewhat concerned(3); Very concerned(4); Extremely concerned(5); Don’t know (DK) Please circle the number/response that best applies.
IB. Parents’ concerns regarding scoliosis (Present concerns)
229
Not a Very Very Don’t Child’s
Before surgery, our child’s Problem Minimal Mild Moderate Severe Severe Remember Rating* problems due to scoliosis were: 0 1 2 3 4 5 DR (0 to 5,DR)
1. Effect on physical appearance 0 1 2 3 4 5 DR
i. Back looked curved or crooked 0 1 2 3 4 5 DR
ii. Bump in the back or prominent ribs 0 1 2 3 4 5 DR
iii. Shoulders not at same level 0 1 2 3 4 5 DR
iv. Shoulder blades asymmetric 0 1 2 3 4 5 DR
v. Chest or breasts not symmetrical 0 1 2 3 4 5 DR
vi. Waistline is asymmetrical or
“hips” are not balanced
0 1 2 3 4 5 DR
vii. Body leaned to one side 0 1 2 3 4 5 DR
viii. Other aspects: 0 1 2 3 4 5 DR
2. Back pain 0 1 2 3 4 5 DR
3. Effect on physical activities 0 1 2 3 4 5 DR
4. Effect on sports/recreation 0 1 2 3 4 5 DR
5. Wearing a brace 0 1 2 3 4 5 DR
6. Problems with emotions 0 1 2 3 4 5 DR
7. Effect on self esteem (the way our child felt about her or himself)
0 1 2 3 4 5 DR
8. Effect on relationships/friendships 0 1 2 3 4 5 DR
9. Other problems: 0 1 2 3 4 5 DR
10. Other problems: 0 1 2 3 4 5 DR
Patients experience certain problems or difficulties that they or their parents believe are related to, or caused by scoliosis. Before surgery, how much of a problem did you think each of the following issues was for your child?
*Before surgery, how much of a problem did your child* think each of the following issues was?
Not a problem(0); Minimal(1); Mild(2); Moderate(3); Severe(4); Extremely severe(5); Don’t remember(DR) Please circle the number/response that best applies.
IIA. The patient’s previous problems: Parents’ perspective (Before surgery)
230
Not a Very Very No Child’s
Since surgery, our child’s present Problem Minimal Mild Moderate Severe Severe Change Rating* problems due to scoliosis are: 0 1 2 3 4 5 NC (0 to 5,NC)
1. Effect on physical appearance 0 1 2 3 4 5 NC
i. Back looks curved or crooked 0 1 2 3 4 5 NC
ii. Bump in the back or prominent ribs 0 1 2 3 4 5 NC
iii. Shoulders not at same level 0 1 2 3 4 5 NC
iv. Shoulder blades asymmetric 0 1 2 3 4 5 NC
v. Chest or breasts not symmetrical 0 1 2 3 4 5 NC
vii. Waistline is asymmetrical or
“hips” are not balanced
0 1 2 3 4 5 NC
vii. Body leans to one side (trunk imbalance) 0 1 2 3 4 5 NC
viii. Other aspects: 0 1 2 3 4 5 NC
2. Back pain 0 1 2 3 4 5 NC
3. Effect on physical activities 0 1 2 3 4 5 NC
4. Effect on participation in sports 0 1 2 3 4 5 NC
5. Wearing a brace 0 1 2 3 4 5 NC
6. Problems with emotions 0 1 2 3 4 5 NC
7. Effect on self esteem (the way my child felt about her or himself)
0 1 2 3 4 5 NC
8. Effect on relationships/friendships 0 1 2 3 4 5 NC
9. Other problems: 0 1 2 3 4 5 NC
10. Other problems: 0 1 2 3 4 5 NC
After surgery, how much of a problem do you think each of these issues is for your child now? *After surgery, how much of a problem does your child* think each of following issues is now? Not a problem(0); Minimal(1); Mild(2); Moderate(3); Severe(4); Extremely severe(5); No change(NC) Please circle the number/response that best applies.
IIB. The patient’s present problems: Parents’ perspective (After surgery)
231 Child’s If our child had not had surgery, Not a Extremely Very Very Extremely Don’t Rating of the problems she/he might have had Problem Unlikely Unlikely Unlikely Possible Likely Likely Likely Know Likelihood* in the future because of scoliosis are: 0 1 2 3 4 5 6 7 DK (0 to 7, DK)
1. Physical appearance might worsen in the future
0 1 2 3 4 5 6 7 DK
2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK
3. Restricted physical activities in the future
0 1 2 3 4 5 6 7 DK
4. Restricted participation in sports in the future
0 1 2 3 4 5 6 7 DK
5. Emotional or psychological problems in the future
0 1 2 3 4 5 6 7 DK
6. Self esteem might be affected (the way my child felt about her or himself)
0 1 2 3 4 5 6 7 DK
7. Problems with relationships/marriage
0 1 2 3 4 5 6 7 DK
8. Problems with pregnancy/childbirth
0 1 2 3 4 5 6 7 DK
9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK
10. Employment/career might be affected
0 1 2 3 4 5 6 7 DK
11. Lung and heart problems in the future
0 1 2 3 4 5 6 7 DK
12. General health might be affected in the future
0 1 2 3 4 5 6 7 DK
13. Shorter life span 0 1 2 3 4 5 6 7 DK
14. Other problems: 0 1 2 3 4 5 6 7 DK
15. Other problems: 0 1 2 3 4 5 6 7 DK
IIIA. Likelihood of future problems: Parents’ perspective (Before surgery)
Parents express many concerns about future problems that they believe might occur if their child’s scoliosis is not treated. Before surgery, what did you think was the likelihood that this problem would occur if your child’s scoliosis was not treated?
*Before surgery, what did your child* think was the likelihood that this problem would occur if the scoliosis was not treated?
Not a problem(0);Extremely unlikely:<1%(1);Very unlikely:1%-5%(2);Unlikely:5%-25%(3);
Possible:25%to 50%(4); Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7);
Don’t know(DK) Please circle the number/response that best applies.
232
Child’s Since surgery, the problems that Not a Extremely Very Very Extremely Don’t Rating of our child might still have in the future Problem Unlikely Unlikely Unlikely Possible Likely Likely Likely Know Likelihood* because of scoliosis are: 0 1 2 3 4 5 6 7 DK (0 to 7, DK)
1. Physical appearance might worsen in the future
0 1 2 3 4 5 6 7 DK
2. Develop back pain in the future 0 1 2 3 4 5 6 7 DK
3. Restricted physical activities in the future
0 1 2 3 4 5 6 7 DK
4. Restricted participation in sports in the future
0 1 2 3 4 5 6 7 DK
5. Emotional or psychological problems in the future
0 1 2 3 4 5 6 7 DK
6. Self esteem might be affected (the way my child felt about her or himself)
0 1 2 3 4 5 6 7 DK
7. Problems with relationships/marriage
0 1 2 3 4 5 6 7 DK
8. Problems with pregnancy/childbirth
0 1 2 3 4 5 6 7 DK
9. Difficulties with sexual function 0 1 2 3 4 5 6 7 DK
10. Employment/career might be affected
0 1 2 3 4 5 6 7 DK
11. Lung and heart problems in the future
0 1 2 3 4 5 6 7 DK
12. General health might be affected in the future
0 1 2 3 4 5 6 7 DK
13. Shorter life span 0 1 2 3 4 5 6 7 DK
14. Other problems: 0 1 2 3 4 5 6 7 DK
15. Other problems: 0 1 2 3 4 5 6 7 DK
Patients and their parents express certain concerns for future problems that they believe might occur if the scoliosis is not treated. As a result of the surgery, what do you now believe is the likelihood that each of these problems might occur in the future?
*As a result of the surgery, what your child* now think is the likelihood that each of these problems might occur in the future?
Not a problem(0);Extremely unlikely:<1%(1);Very unlikely:1%-5%(2);Unlikely:5%-25%(3);
Possible:25%to 50%(4); Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7);
Don’t know(DK) Please circle the number/response that best applies.
IIIB. Likelihood of future problems: Parents’ perspective (After surgery)
233
Very Strength Not at all Hardly Slightly Somewhat Strongly Strongly of Child’s
What we hoped or wished that surgery Desired Desired Desired Desired Desired Desired Wishes*
would accomplish for our child was: 0 1 2 3 4 5 (0 to 5,DK)
1. Improve our child’s physical appearance 0 1 2 3 4 5
2. Prevent worsening of physical appearance 0 1 2 3 4 5
3. Decrease our child’s back pain 0 1 2 3 4 5
4. Prevent future back pain 0 1 2 3 4 5
5. Improve our child’s physical activity 0 1 2 3 4 5
6. Prevent restriction of future physical activity
0 1 2 3 4 5
7. Improve our child’s participation in sports/recreation
0 1 2 3 4 5
8. Prevent restriction of future participation in sports/recreation
0 1 2 3 4 5
9. Stop our child wearing a brace 0 1 2 3 4 5
10. Improve our child’s emotional well being 0 1 2 3 4 5
11. Prevent future emotional and/or psychological problems
0 1 2 3 4 5
12. Improve our child’s self-esteem (the way our child felt about her or himself)
0 1 2 3 4 5
13. Prevent loss of self esteem in the future 0 1 2 3 4 5
14. Improve our child’s friendships and/or relationships
0 1 2 3 4 5
15. Prevent problems with future relationships and/or marriage
0 1 2 3 4 5
16. Prevent problems with pregnancy and/or childbirth
0 1 2 3 4 5
17. Prevent problems with sexual function 0 1 2 3 4 5
18. Improve our child’s employment and/or career opportunities
0 1 2 3 4 5
19. Prevent future lung and heart problems 0 1 2 3 4 5
20. Prevent future general health problems 0 1 2 3 4 5
21. Prevent early mortality (death) 0 1 2 3 4 5
22. Other goal: 0 1 2 3 4 5
23. Other goal: 0 1 2 3 4 5
IVA. Reasons for undergoing surgery: Parents’ hopes, wishes or desires
Parents report several reasons for why they chose surgery for treatment of their child’s scoliosis.
To what extent did you wish or desire that surgery would accomplish each of the following goals for your child? *To what extent did your child wish or desire* that surgery would accomplish each of the goals?
Not at all desired(0), Hardly desired(1); Slightly desired(2); Somewhat desired(3); Strongly desired (4);
Very strongly desired(5); Don’t know(DK) Please circle the number/response that best applies.
234
Parents’ ranking *Parents’ ranking of their of their top 10 wishes (from 1 to 10) child’s top 10 wishes (from1 to 10)
1. Improve our child’s physical appearance
2. Prevent worsening of physical appearance
3. Decrease our child’s back pain
4. Prevent future back pain
5. Improve our child’s physical activity
6. Prevent restriction of future physical activity
7. Improve our child’s participation in sports/recreation
8. Prevent restriction of future participation in sports/recreation
9. Stop our child wearing a brace
10. Improve our child’s emotional well being
11. Prevent future emotional and/or psychological problems
12. Improve our child’s self-esteem (the way our child felt about her or himself)
13. Prevent loss of self esteem in the future
14. Improve our child’s friendships and/or relationships
15. Prevent problems with future relationships and/or marriage
16. Prevent problems with pregnancy and/or childbirth
17. Prevent problems with sexual function
18. Improve our child’s employment and/or career opportunities
19. Prevent future lung and heart problems
20. Prevent future general health problems
21. Prevent early mortality (death)
22. Other goal:
23. Other goal:
IVB. Reasons for undergoing surgery: Parents’ hopes, wishes or desires
Rank your top 10 wishes from surgery for your child’s scoliosis, in order of most to least important wish. *Rank your child’s* top 10 wishes from surgery for scoliosis, in order of most to least important wish.
235
Extremely Very Very Extremely Don’t
Before our child’s surgery we Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know
thought surgery was likely to: 0 1 2 3 4 5 6 7 DK 1. Improve our child’s physical
appearance 0 1 2 3 4 5 6 7 DK
2. Prevent worsening of physical appearance in the future
0 1 2 3 4 5 6 7 DK
3. Decrease our child’s back pain 0 1 2 3 4 5 6 7 DK
4. Prevent future back pain 0 1 2 3 4 5 6 7 DK
5. Improve our child’s physical activity
0 1 2 3 4 5 6 7 DK
6. Prevent restriction of future physical activity
0 1 2 3 4 5 6 7 DK
7. Improve our child’s participation in sports/recreation
0 1 2 3 4 5 6 7 DK
8. Prevent restriction of future participation in sports/recreation
0 1 2 3 4 5 6 7 DK
9. Stop our child wearing a brace 0 1 2 3 4 5 6 7 DK
10. Improve our child’s emotional well being
0 1 2 3 4 5 6 7 DK
11. Prevent future emotional and/or psychological problems
0 1 2 3 4 5 6 7 DK
12. Improve our child’s self-esteem (the way our child felt about her or himself)
0 1 2 3 4 5 6 7 DK
13. Prevent loss of self esteem in the future
0 1 2 3 4 5 6 7 DK
14. Improve our child’s friendships and/or relationships
0 1 2 3 4 5 6 7 DK
15. Prevent problems with future relationships and/or marriage
0 1 2 3 4 5 6 7 DK
16. Prevent problems with pregnancy and/or childbirth
0 1 2 3 4 5 6 7 DK
17. Prevent problems with sexual function
0 1 2 3 4 5 6 7 DK
18. Improve our child’s employment and/or career opportunities
0 1 2 3 4 5 6 7 DK
19. Prevent future lung and heart problems
0 1 2 3 4 5 6 7 DK
20. Prevent future general health problems
0 1 2 3 4 5 6 7 DK
21. Prevent early mortality (death) 0 1 2 3 4 5 6 7 DK
22. Other goal: 0 1 2 3 4 5 6 7 DK
23. Other goal: 0 1 2 3 4 5 6 7 DK
VA. Parents’ expectations of surgery: likelihood of results
Parents report several reasons for why they chose surgery for treatment of their child’s scoliosis.
How likely did you think surgery would accomplish each of these goals for your child? Never(0); Extremely unlikely:<1%(1); Very unlikely:1%-5%(2); Unlikely:5%-25%(3); Possible:25%to50%(4);
Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7); Don’t know(DK)
Please circle the number/response that best applies.
236
No Very Very
The minimum amount of change or reduction of Change Little Some Moderate Large Large future risk that we would have accepted for our child: 0 1 2 3 4 5
1. Improve our child’s physical appearance 0 1 2 3 4 5
2. Prevent worsening of physical appearance 0 1 2 3 4 5
3. Decrease our child’s back pain 0 1 2 3 4 5
4. Prevent future back pain 0 1 2 3 4 5
5. Improve our child’s physical activity 0 1 2 3 4 5
6. Prevent restriction of future physical activity
0 1 2 3 4 5
7. Improve our child’s participation in sports/recreation
0 1 2 3 4 5
8. Prevent restriction of future participation in sports/recreation
0 1 2 3 4 5
9. Stop our child wearing a brace 0 1 2 3 4 5
10. Improve our child’s emotional well being 0 1 2 3 4 5
11. Prevent future emotional and/or psychological problems
0 1 2 3 4 5
12. Improve our child’s self-esteem (the way our child felt about her or himself)
0 1 2 3 4 5
13. Prevent loss of self esteem in the future 0 1 2 3 4 5
14. Improve our child’s friendships and/or relationships
0 1 2 3 4 5
15. Prevent problems with future relationships and/or marriage
0 1 2 3 4 5
16. Prevent problems with pregnancy and/or childbirth
0 1 2 3 4 5
17. Prevent problems with sexual function 0 1 2 3 4 5 18. Improve our child’s employment and/or career opportunities
0 1 2 3 4 5
19. Prevent future lung and heart problems 0 1 2 3 4 5
20. Prevent future general health problems 0 1 2 3 4 5
21. Prevent early mortality (death) 0 1 2 3 4 5
22. Other goal: 0 1 2 3 4 5
23. Other goal: 0 1 2 3 4 5
VB. Parents’ expectations of surgery: magnitude of results expected
Parents report several reasons for why they chose surgery for treatment of their child’s scoliosis. For each reason, what was the minimum change (improvement or reduction of future risk) for your child, that you would have accepted to be satisfied?
No change (0); Very small:< 5%(1); Small:5%to25%(2); Moderate:25%to50%(3); Large:50% to 75%(4);
Very large:75% to 100%(5) Please circle the number/response that best applies.
237
Not at all Hardly Slightly Somewhat Very Extremely Child’s
Concerned Concerned Concerned Concerned Concerned Concerned Concern* Short term problems & risks 0 1 2 3 4 5 (0 to 5,DK)
1. Pain after surgery 0 1 2 3 4 5
2. Unpleasant scar 0 1 2 3 4 5
3. Back stiffness 0 1 2 3 4 5
4. Restricted physical activities 0 1 2 3 4 5
5. Infection (early) 0 1 2 3 4 5
6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5
7. Loss of privacy and independence 0 1 2 3 4 5
8. Risks of blood transfusion 0 1 2 3 4 5
9. Sensory changes or muscle weakness (short term)
0 1 2 3 4 5
10. Paralysis (temporary) 0 1 2 3 4 5
11. Death 0 1 2 3 4 5
12. Other concerns: 0 1 2 3 4 5
Long term risks (1 year after surgery to rest of your life)
1. Back pain in the future 0 1 2 3 4 5
2. Unpleasant scar 0 1 2 3 4 5
3. Partial or unsatisfactory correction 0 1 2 3 4 5
4. Back stiffness (lacking flexibility) 0 1 2 3 4 5
5. Restricted physical activities 0 1 2 3 4 5
6. Infection (late) 0 1 2 3 4 5
7. Rods/hooks might cause problems 0 1 2 3 4 5
8. Spine might not fuse properly 0 1 2 3 4 5
9. Deformity might recur or worsen 0 1 2 3 4 5
10. Risks of blood transfusion 0 1 2 3 4 5
11. Sensory changes or muscle weakness (permanent)
0 1 2 3 4 5
12. Paralysis (permanent) 0 1 2 3 4 5
13. Need for another operation 0 1 2 3 4 5
14. Other concerns: 0 1 2 3 4 5
Parents express many concerns regarding the adverse effects and risks of scoliosis surgery.
Before surgery, how concerned were you about any of these adverse outcomes for your child? *Before surgery, how concerned was your child* about any of these adverse outcomes? Not concerned(0); Hardly concerned(1); Slightly concerned(2); Somewhat concerned(3); Very concerned(4);
Extremely concerned(5); Don’t know(DK) Please circle the number/response that best applies.
VIA. Parents’ concerns regarding scoliosis surgery: magnitude of concern
238
Not a Extremely Very Very Extremely Don’t
Concern Unlikely Unlikely Unlikely Possible Likely Likely Likely Remember Likelihood of short term problems & risks 0 1 2 3 4 5 6 7 DR
1. Pain after surgery 0 1 2 3 4 5 6 7 DR
2. Unpleasant scar 0 1 2 3 4 5 6 7 DR
3. Back stiffness 0 1 2 3 4 5 6 7 DR
4. Restricted physical activities 0 1 2 3 4 5 6 7 DR
5. Infection (early) 0 1 2 3 4 5 6 7 DR
6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 6 7 DR
7. Loss of privacy and independence 0 1 2 3 4 5 6 7 DR
8. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR
9. Sensory changes or muscle weakness (short term)
0 1 2 3 4 5 6 7 DR
10. Paralysis (temporary) 0 1 2 3 4 5 6 7 DR
11. Death 0 1 2 3 4 5 6 7 DR
12. Other concerns: 0 1 2 3 4 5 6 7 DR
Likelihood of long term risks (1 year after surgery to rest of your life)
1. Back pain in the future 0 1 2 3 4 5 6 7 DR
2. Unpleasant scar 0 1 2 3 4 5 6 7 DR
3. Partial or unsatisfactory correction 0 1 2 3 4 5 6 7 DR
4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 6 7 DR
5. Restricted physical activities 0 1 2 3 4 5 6 7 DR
6. Infection (late) 0 1 2 3 4 5 6 7 DR
7. Rods/hooks might cause problems 0 1 2 3 4 5 6 7 DR
8. Spine might not fuse properly 0 1 2 3 4 5 6 7 DR
9. Deformity might recur or worsen 0 1 2 3 4 5 6 7 DR
10. Risks of blood transfusion 0 1 2 3 4 5 6 7 DR
11. Sensory changes or muscle weakness (permanent)
0 1 2 3 4 5 6 7 DR
12. Paralysis (permanent) 0 1 2 3 4 5 6 7 DR
13. Need for another operation 0 1 2 3 4 5 6 7 DR
14. Other concerns: 0 1 2 3 4 5 6 7 DR
Parents express many concerns regarding the adverse effects and risks of scoliosis surgery.
Before surgery, how likely did you think that any of these adverse outcomes were, for your child? Never(0); Extremely unlikely:<1%(1); Very unlikely:1%-5%(2); Unlikely:5%-25%(3); Possible: 25%-50%(4);
Likely:50%-75%(5); Very likely:75%-95%(6); Extremely likely:95%-100%(7);Don’t Remember(DR)
Please circle the number/response that best applies.
VIB. Parents’ concerns regarding scoliosis surgery: likelihood of risks
239
Much Moderately Slightly No Slightly Much Completely As a result of surgery, Worse Worse Worse Change Better Better Better our child’s _______________ is now: -3 -2 -1 0 +1 +2 +3 1. Physical appearance -3 -2 -1 0 +1 +2 +3
i. Curve of the back -3 -2 -1 0 +1 +2 +3
ii. Prominence of ribs or bump in the back -3 -2 -1 0 +1 +2 +3
iii. Level of shoulders -3 -2 -1 0 +1 +2 +3
iv. Shoulder blade symmetry -3 -2 -1 0 +1 +2 +3
iv. Chest/breast asymmetry -3 -2 -1 0 +1 +2 +3
v. Balanced waistline or “hips” -3 -2 -1 0 +1 +2 +3
vi. Leaning of the body to one side -3 -2 -1 0 +1 +2 +3
vii. Height -3 -2 -1 0 +1 +2 +3
viii. Other aspects: -3 -2 -1 0 +1 +2 +3
2. Back pain -3 -2 -1 0 +1 +2 +3
3. Level of physical activity -3 -2 -1 0 +1 +2 +3
4. Participation in sports/recreation -3 -2 -1 0 +1 +2 +3
5. Brace wear -3 -2 -1 0 +1 +2 +3
6. Emotional/psychological well being -3 -2 -1 0 +1 +2 +3
7. Self-esteem -3 -2 -1 0 +1 +2 +3
8. Friendships/relationships -3 -2 -1 0 +1 +2 +3
As a result of surgery, our child’s Increased Increased Increased No Decreased Decreased Decreased risk of future problems has now: Severely A lot A little Change A little A lot Completely 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3
2. Risk of future back pain -3 -2 -1 0 +1 +2 +3
3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3
4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3
5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3
6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3
7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3
8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3
9. Problems with sexual function -3 -2 -1 0 +1 +2 +3
10. Problems with employment/career opportunities
-3 -2 -1 0 +1 +2 +3
11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3
12. Problems with general health -3 -2 -1 0 +1 +2 +3
13. Risk of shorter life span (early mortality) -3 -2 -1 0 +1 +2 +3
VIIA. Results of surgery: magnitude of change from parents’ perspective
As a result of surgery, how much change has your child experienced for each characteristic listed? Much Worse (-3); Moderately worse(-2); Slightly worse (-1); No change (0); Slightly better(+1); Much better(+2); Completely better(+3) Please circle the number/response that best applies.
How much, do you believe, has surgery reduced the risk of future problems for your child? Increased risk severely(-3); Increased list a lot(-2); Increased risk a little(-1); No change in risk(0); Decreased risk a little (+1); Decreased risk a lot (+2); Eliminated risk completely (+3)
240
Neither dissatisfied
Very Moderately Slightly nor Slightly Moderately Very As a result of our child’s surgery, Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfied we are _____________ with our child’s: -3 -2 -1 0 +1 +2 +3 1. Physical appearance -3 -2 -1 0 +1 +2 +3
i. Straightened or decreased curve of the back -3 -2 -1 0 +1 +2 +3
ii. Decreased the prominence or bump in the back -3 -2 -1 0 +1 +2 +3
iii. Leveled shoulders -3 -2 -1 0 +1 +2 +3
iv. Corrected shoulder blade asymmetry -3 -2 -1 0 +1 +2 +3
iv. Corrected the chest/breast asymmetry -3 -2 -1 0 +1 +2 +3
v. Balanced the waistline or “hips” -3 -2 -1 0 +1 +2 +3
vi. Corrected the leaning of the body to one side -3 -2 -1 0 +1 +2 +3
vii. Increased height -3 -2 -1 0 +1 +2 +3
viii. Other aspects: -3 -2 -1 0 +1 +2 +3
2. Back pain -3 -2 -1 0 +1 +2 +3
3. Level of physical activity -3 -2 -1 0 +1 +2 +3
4. Participation in sports/recreation -3 -2 -1 0 +1 +2 +3
5. Brace wear -3 -2 -1 0 +1 +2 +3
6. Emotional/psychological well being -3 -2 -1 0 +1 +2 +3
7. Self-esteem -3 -2 -1 0 +1 +2 +3
8. Friendships/relationships -3 -2 -1 0 +1 +2 +3
Neither dissatisfied
Very Moderately Slightly nor Slightly Moderately Very As a result of our child’s surgery, we are _______Dissatisfied Dissatisfied Dissatisfied Satisfied Satisfied Satisfied Satisfiedwith the reduction of risk for future problem: -3 -2 -1 0 +1 +2 +3 1. Physical appearance worsening in the future -3 -2 -1 0 +1 +2 +3
2. Future back pain -3 -2 -1 0 +1 +2 +3
3. Restriction of future physical activity -3 -2 -1 0 +1 +2 +3
4. Restriction of future participation in sports -3 -2 -1 0 +1 +2 +3
5. Future emotional/psychological problems -3 -2 -1 0 +1 +2 +3
6. Future problems with self-esteem -3 -2 -1 0 +1 +2 +3
7. Problems with future relationships/marriage -3 -2 -1 0 +1 +2 +3
8. Problems with pregnancy/childbirth -3 -2 -1 0 +1 +2 +3
9. Problems with sexual function -3 -2 -1 0 +1 +2 +3
10. Problems with employment/career opportunities
-3 -2 -1 0 +1 +2 +3
11. Future lung and heart problems -3 -2 -1 0 +1 +2 +3
12. Problems with general health -3 -2 -1 0 +1 +2 +3
13. Shorter life span (early mortality) -3 -2 -1 0 +1 +2 +3
VIIB. Satisfaction with results: Parents’ perspective
How satisfied are you with effects of surgery on each of the following issues for your child? Very dissatisfied (-3); Moderately dissatisfied (-2); Slightly dissatisfied(-1); Neither dissatisfied nor satisfied(0);Slightly satisfied (+1); Moderately dissatisfied(+2); Very dissatisfied (+3) Please circle the number/response that best applies.
241
1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
THANK YOU VERY MUCH FOR YOUR TIME AND PATIENCE COMPLETING THIS SURVEY !
VIII. Outcomes of surgery: any surprises.
What, if any, surprises or unexpected events has your child or you experienced following surgery?
Please list both pleasant and unpleasant surprises that your child or you have experienced.
242
Investigators:
Unni G. Narayanan, MD
Douglas M. Hedden, MD, FRCSC
Benjamin Alman, MD, FRCSC
Andrew Howard, MD, MSc, FRCSC
James G. Wright, MD, MPH, FRCSC
The Hospital for Sick Children Division of Orthopaedics
555 University Avenue, S-107 Toronto, Ontario
M5R 1N4 Canada
Priorities, goals & expectations of surgery for
adolescent idiopathic scoliosis: A survey of Canadian surgeons
243
What is this survey about? We are interested in your views on the impact of adolescent idiopathic scoliosis on your
patients, your perspective on the natural history of this condition, your typical goals for surgery
and your estimation of the likelihood of certain desirable and adverse outcomes from the
surgical treatment of adolescent idiopathic scoliosis.
Your Involvement We would appreciate your efforts in completing this survey. It involves some basic demographic
information and six primary questions, each with individual items for your consideration. Please
indicate your responses by circling the number or response that best applies from your perspective.
Confidentiality Your answers are strictly confidential. Your identity and that of your institution will not be
revealed in any results, and the aggregate analyses will be conducted blind to these data.
Who can you contact for more information? If you have any questions, concerns or suggestions please contact Unni Narayanan at (416)
813-6432 or by e-mail at [email protected]
Information about survey
244 Name of Surgeon (optional): Name of Institution (optional): Address (optional): Please provide location of practice: City: State/Province: Zip/Postal Code (optional) Country:
Training Background (Check all that apply) Spine fellowship Pediatric Orthopaedic fellowship Other
Type of practice of Primary appointment (Check all that apply) Teaching Residents Teaching Fellows No-teaching University hospital/affiliation Children’s hospital Community hospital
Member of SRS (Check one) Active Associate Candidate Emeritus Honorary International Non-member
Years in practice (Check one) Less than 5 years
5 to 10 years
10 to 15 years
15 to 20 years
> 20 years
Retired
Adolescent idiopathic scoliosis constitutes % of my surgical practice. < 10% 10% to 25% 25% to 50% 50% to 75% > 75%
Demographic Information
245
Extremely Very Very Extremely Don’t
Left untreated, the likelihood that Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know
scoliosis might be associated with the (< 1%) (1%-5%) (5%-25%) (25%-50%) (50%-75%) (75%-95%) (>95%)
following problems for my patients: 0 1 2 3 4 5 6 7 DK
1. Affect current physical appearance 0 1 2 3 4 5 6 7 DK
2. Affect future physical appearance 0 1 2 3 4 5 6 7 DK
3. Cause current back pain 0 1 2 3 4 5 6 7 DK
4. Cause back pain in future 0 1 2 3 4 5 6 7 DK
5. Limit current physical activities 0 1 2 3 4 5 6 7 DK
6. Limit future physical activities 0 1 2 3 4 5 6 7 DK
7. Limit current participation in sports/recreation
0 1 2 3 4 5 6 7 DK
8. Limit future participation in sports/recreation
0 1 2 3 4 5 6 7 DK
9. Create current emotional and/or psychological problems
0 1 2 3 4 5 6 7 DK
10. Create future emotional and/or psychological problems
0 1 2 3 4 5 6 7 DK
11. Affect current self esteem 0 1 2 3 4 5 6 7 DK
12. Affect future self esteem 0 1 2 3 4 5 6 7 DK
13. Affect current friendships/relationships
0 1 2 3 4 5 6 7 DK
14. Affect future relationships/marriage
0 1 2 3 4 5 6 7 DK
15. Affect pregnancy/ childbirth 0 1 2 3 4 5 6 7 DK
16. Affect sexual function 0 1 2 3 4 5 6 7 DK
17. Affect employment and/or career 0 1 2 3 4 5 6 7 DK
18. Cause lung and heart problems 0 1 2 3 4 5 6 7 DK
19. Affect general health in future 0 1 2 3 4 5 6 7 DK
20. Decrease life span (early mortality) 0 1 2 3 4 5 6 7 DK
21. Other problems: 0 1 2 3 4 5 6 7 DK
22. Other problems: 0 1 2 3 4 5 6 7 DK
I. Natural history of untreated adolescent idiopathic scoliosis: Likelihood of problems
Consider a typical patient with adolescent idiopathic scoliosis, who has met your criteria for recommending surgery. Without surgery, what do you think is the likelihood that adolescent idiopathic scoliosis would be associated with each of the current or future problems listed below, for such a patient. Please circle the response that applies best.
246
Very Very
Never Rarely Rarely Sometimes Often Often Always
My goals of surgery: 0 1 2 3 4 5 6
1. To improve current physical appearance 0 1 2 3 4 5 6
2. To prevent worsening of physical appearance 0 1 2 3 4 5 6
3. To decrease current back pain 0 1 2 3 4 5 6
4. To prevent future back pain 0 1 2 3 4 5 6
5. To improve current physical activity 0 1 2 3 4 5 6
6. To prevent restriction of future physical activity
0 1 2 3 4 5 6
7. To improve current participation in sports 0 1 2 3 4 5 6
8. To prevent restriction of future participation in sports/recreation
0 1 2 3 4 5 6
9. To stop/eliminate need for wearing a brace 0 1 2 3 4 5 6
10. To improve current emotional well being 0 1 2 3 4 5 6
11. To prevent future emotional and/or psychological problems
0 1 2 3 4 5 6
12. To improve self-esteem 0 1 2 3 4 5 6
13. To prevent loss of self esteem in the future
0 1 2 3 4 5 6
14. To improve current friendships and/or relationships
0 1 2 3 4 5 6
15. To prevent problems with future relationships and/or marriage
0 1 2 3 4 5 6
16. To prevent problems with pregnancy and/or childbirth
0 1 2 3 4 5 6
17. To prevent problems with sexual function 0 1 2 3 4 5 6
18. To improve employment and/or career opportunities
0 1 2 3 4 5 6
19. To prevent future lung and heart problems 0 1 2 3 4 5 6
20. To prevent future general health problems 0 1 2 3 4 5 6
21. To prevent early mortality 0 1 2 3 4 5 6
22. Other goal: 0 1 2 3 4 5 6
23. Other goal: 0 1 2 3 4 5 6
II. Goals of surgery
Patients with adolescents idiopathic scoliosis and their parents express a variety of reasons for why they undertake surgery. In your experience, how often is each of the following reasons among your goals of surgery?
Please circle the response that applies best.
247
My goals of surgery: Ranking ( 1 to ----- )
1. To improve current physical appearance
2. To prevent worsening of physical appearance
3. To decrease current back pain
4. To prevent future back pain
5. To improve current physical activity
6. To prevent restriction of future physical activity
7. To improve current participation in sports
8. To prevent restriction of future participation in sports/recreation
9. To eliminate brace wear
10. To improve current emotional well being
11. To prevent future emotional and/or psychological problems
12. To improve current self-esteem
13. To prevent future loss of self esteem
14. To improve current friendships and/or relationships
15. To prevent problems with future relationships and/or marriage
16. To prevent problems with pregnancy and/or childbirth
17. To prevent problems with sexual function
18. To improve employment and/or career opportunities
19. To prevent future lung and heart problems
20. To prevent future general health problems
21. To prevent early mortality
22. Other goal:
23. Other goal:
III. Ranking the goals of surgery
From the list below, rank the reasons (1 being highest) for recommending surgery from the most important to least important reason, from your perspective. You may rank as many (or as few) as you deem appropriate.
248
Extremely Very Very Extremely Don’t
Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know (< 1%) (1%-5%) (5%-25%) (25%-50%) (50%-75%) (75%-95%) (>95%) Likelihood of outcomes from surgery: 0 1 2 3 4 5 6 7 DK
1. Improvement of current physical appearance
0 1 2 3 4 5 6 7 DK
2. Prevention of worse of physical appearance
0 1 2 3 4 5 6 7 DK
3. Reduction of current back pain 0 1 2 3 4 5 6 7 DK
4. Prevention of future back pain 0 1 2 3 4 5 6 7 DK
5. Improvement of current physical activity
0 1 2 3 4 5 6 7 DK
6. Prevention of future physical activity restriction
0 1 2 3 4 5 6 7 DK
7. Improvement in current participation in sports
0 1 2 3 4 5 6 7 DK
8. Prevention of future restriction in sports participation
0 1 2 3 4 5 6 7 DK
9. Prevention of brace wear 0 1 2 3 4 5 6 7 DK
10. Improvement in current emotional and/or psychological well being
0 1 2 3 4 5 6 7 DK
11. Prevention of future emotional and/or psychological problems
0 1 2 3 4 5 6 7 DK
12. Improvement of self-esteem 0 1 2 3 4 5 6 7 DK
13. Prevention of future loss of self esteem
0 1 2 3 4 5 6 7 DK
14. Improvement of current friendships and/or relationships
0 1 2 3 4 5 6 7 DK
15. Prevention of problems with future relationships and/or marriage
0 1 2 3 4 5 6 7 DK
16. Prevention of problems with pregnancy and/or childbirth
0 1 2 3 4 5 6 7 DK
17. Prevention of problems with sexual function
0 1 2 3 4 5 6 7 DK
18. Improvement in employment and/or career opportunities
0 1 2 3 4 5 6 7 DK
19. Prevention of future lung and heart problems
0 1 2 3 4 5 6 7 DK
20. Prevention of future general health problems
0 1 2 3 4 5 6 7 DK
21. Prevention of early mortality 0 1 2 3 4 5 6 7 DK
22. Other outcome: 0 1 2 3 4 5 6 7 DK
23. Other outcome: 0 1 2 3 4 5 6 7 DK
IV. Expected outcomes of surgery: likelihood of results
Patients with adolescent idiopathic scoliosis, and their parents have a variety of expectations of surgery.
In your experience, what do you believe is the likelihood that surgery will satisfactorily accomplish each of these goals for your typical patient?
Please circle the response that applies best.
249
Extremely Very Very Extremely Don’t
Likelihood of short term problems & risks Never Unlikely Unlikely Unlikely Possible Likely Likely Likely Know (up to 3 months after surgery) (< 1%) (1%-5%) (5%-25%) (25%-50%) (50%-75%) (75%-95%) (>95%) 0 1 2 3 4 5 6 7 DK
1. Pain after surgery 0 1 2 3 4 5 6 7 DK
2. Unpleasant scar 0 1 2 3 4 5 6 7 DK
3. Back stiffness 0 1 2 3 4 5 6 7 DK
4. Restricted physical activities 0 1 2 3 4 5 6 7 DK
5. Infection (early) 0 1 2 3 4 5 6 7 DK
6. Abdominal pain, nausea and vomiting 0 1 2 3 4 5 6 7 DK
7. Loss of privacy and independence 0 1 2 3 4 5 6 7 DK
8. Complications of blood transfusion 0 1 2 3 4 5 6 7 DK
9. Sensory changes or muscle weakness (short term)
0 1 2 3 4 5 6 7 DK
10. Paralysis (temporary) 0 1 2 3 4 5 6 7 DK
11. Death 0 1 2 3 4 5 6 7 DK
12. Other concerns: 0 1 2 3 4 5 6 7 DK
Likelihood of long term risks (2 years after surgery to the rest of your patients’ life)
1. Back pain in the future 0 1 2 3 4 5 6 7 DK
2. Unpleasant scar 0 1 2 3 4 5 6 7 DK
3. Partial or unsatisfactory correction 0 1 2 3 4 5 6 7 DK
4. Back stiffness (lacking flexibility) 0 1 2 3 4 5 6 7 DK
5. Restricted physical activities 0 1 2 3 4 5 6 7 DK
6. Infection (late) 0 1 2 3 4 5 6 7 DK
7. Rods might break or cause problems 0 1 2 3 4 5 6 7 DK
8. Spine might not fuse properly 0 1 2 3 4 5 6 7 DK
9. Deformity might recur or worsen 0 1 2 3 4 5 6 7 DK
10. Complications of blood transfusion 0 1 2 3 4 5 6 7 DK
11. Sensory changes or muscle weakness (permanent)
0 1 2 3 4 5 6 7 DK
12. Paralysis (permanent) 0 1 2 3 4 5 6 7 DK
13. Need for another operation 0 1 2 3 4 5 6 7 DK
14. Other concerns: 0 1 2 3 4 5 6 7 DK
Patients with adolescent idiopathic scoliosis and their parents express a number of concerns regarding the adverse effects and possible risks associated with the surgery for scoliosis. From your experience, what is the likelihood of these adverse events and risks for your typical patient? Please circle the response that applies best.
V. Likelihood of the risks and adverse effects of scoliosis surgery
250
As a result of my daughter’s Not at all Hardly Slightly Somewhat Very Extremely … my Son’s
scoliosis I would be _________ Concerned Concerned Concerned Concerned Concerned Concerned scoliosis
about her: 0 1 2 3 4 5 (0 to 5)
1. Physical appearance at the time 0 1 2 3 4 5
2. Physical appearance in the future 0 1 2 3 4 5
3. Back pain at the time 0 1 2 3 4 5
4. Risk of back pain in the future 0 1 2 3 4 5
5. Physical activity at the time 0 1 2 3 4 5
6. Future physical activity 0 1 2 3 4 5
7. Sports/recreation at the time 0 1 2 3 4 5
8. Future sports/recreation 0 1 2 3 4 5
9. Having to wear a brace 0 1 2 3 4 5
10. Emotional/psychological well being 0 1 2 3 4 5
11. Future emotional/psychological well being
0 1 2 3 4 5
12. Self-esteem at the time 0 1 2 3 4 5
13. Self esteem in the future 0 1 2 3 4 5
14. Friendships/relationships at the time
0 1 2 3 4 5
15. Future relationships/marriage 0 1 2 3 4 5
16. Pregnancy/childbirth 0 1 2 3 4 5 N/A
17. Sexual function 0 1 2 3 4 5
18. Employment/career 0 1 2 3 4 5
19. Risk of future lung and heart problems
0 1 2 3 4 5
20. Future general health problems 0 1 2 3 4 5
21. Having a shorter life 0 1 2 3 4 5
22. Other issue: 0 1 2 3 4 5
23. Other issue: 0 1 2 3 4 5
THANK YOU VERY MUCH FOR COMPLETING THIS SURVEY!
Given your knowledge of adolescent idiopathic scoliosis and its natural history, how concerned would you be (as a parent) with each of the following issues, if your child had adolescent idiopathic scoliosis that met your criteria for surgical intervention? Please circle the response that would apply to your hypothetical daughter. In the extreme right column write
down the corresponding response that would apply for a hypothetical son with the same criteria.
VI. Concerns regarding adolescent idiopathic scoliosis