8
ORIGINAL ARTICLE Health-Related Quality of Life in Adolescents with Inflammatory Bowel Disease Depends on Disease Activity and Psychiatric Comorbidity G. Engelmann D. Erhard M. Petersen P. Parzer A. A. Schlarb F. Resch R. Brunner G. F. Hoffmann H. Lenhartz A. Richterich Ó Springer Science+Business Media New York 2014 Abstract Adolescent patients with inflammatory bowel disease (IBD) show an increased risk for behavioral and emotional dysfunction. Health-related quality of life (HRQoL) is influenced by medical illnesses, as well as by psychiatric disorders, but for adolescents with IBD, the extent to which HRQoL is influenced by these two factors is unclear. For 47 adolescent IBD patients, we analyzed disease activity, HRQoL and whether or not a psychiatric disorder was present. Disease activity was estimated using pediatric Ulcerative Colitis Activity Index and pediatric Crohn’s Disease Activity Index. The IMPACT-III and the EQ-5D were used to measure HRQoL and QoL, respec- tively. In addition, patient and parent diagnostic interviews were performed. 55.3 % patients fulfilled DSM-IV criteria for one or more psychiatric disorders. In all patients, psy- chiatric comorbidity together with disease activity con- tributed to a reduction in quality of life. Adolescents with IBD are at a high risk for clinically relevant emotional or behavioral problems resulting in significantly lower HRQoL. We conclude that accessible, optimally structured psychotherapeutic and/or psychiatric help is needed in adolescent patients with IBD. Keywords Health related quality of life Á Adolescent Á IMPACT III Á Inflammatory bowel disease Introduction The symptoms of inflammatory bowel diseases (IBD) can dramatically interfere with daily life. The adolescent patient with Crohn’s disease (CD) may have concerns regarding short stature, delayed puberty, tiredness, loss of energy and feeling restricted in pursuing daily activities like regular school attendance or sports. Patients suffering from UC are more disturbed by gastrointestinal symptoms G. Engelmann (&) Department of Pediatrics, Lukas Hospital, 41464 Neuss, Germany e-mail: [email protected] G. Engelmann Á D. Erhard Á M. Petersen Á G. F. Hoffmann Department of Pediatrics, University Medical Center, University of Heidelberg, Heidelberg, Germany P. Parzer Á F. Resch Á R. Brunner Department of Child and Adolescent Psychiatry, University of Heidelberg, Heidelberg, Germany A. A. Schlarb Faculty of Psychology and Sports Science, University of Bielefeld, Bielefeld, Germany H. Lenhartz Catholic Children’s Hospital Wilhelmstift, Hamburg, Germany A. Richterich Department of Psychosomatics in Children and Adolescents, University Medical Center Hamburg-Eppendorf, Hamburg, Germany A. Richterich Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics, HELIOS St.-Josefs-Hospital Bochum- Linden, Bochum, Germany 123 Child Psychiatry Hum Dev DOI 10.1007/s10578-014-0471-5

Health-Related Quality of Life in Adolescents with Inflammatory Bowel Disease Depends on Disease Activity and Psychiatric Comorbidity

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ORIGINAL ARTICLE

Health-Related Quality of Life in Adolescents with InflammatoryBowel Disease Depends on Disease Activity and PsychiatricComorbidity

G. Engelmann • D. Erhard • M. Petersen • P. Parzer •

A. A. Schlarb • F. Resch • R. Brunner • G. F. Hoffmann •

H. Lenhartz • A. Richterich

� Springer Science+Business Media New York 2014

Abstract Adolescent patients with inflammatory bowel

disease (IBD) show an increased risk for behavioral and

emotional dysfunction. Health-related quality of life

(HRQoL) is influenced by medical illnesses, as well as by

psychiatric disorders, but for adolescents with IBD, the

extent to which HRQoL is influenced by these two factors

is unclear. For 47 adolescent IBD patients, we analyzed

disease activity, HRQoL and whether or not a psychiatric

disorder was present. Disease activity was estimated using

pediatric Ulcerative Colitis Activity Index and pediatric

Crohn’s Disease Activity Index. The IMPACT-III and the

EQ-5D were used to measure HRQoL and QoL, respec-

tively. In addition, patient and parent diagnostic interviews

were performed. 55.3 % patients fulfilled DSM-IV criteria

for one or more psychiatric disorders. In all patients, psy-

chiatric comorbidity together with disease activity con-

tributed to a reduction in quality of life. Adolescents with

IBD are at a high risk for clinically relevant emotional or

behavioral problems resulting in significantly lower

HRQoL. We conclude that accessible, optimally structured

psychotherapeutic and/or psychiatric help is needed in

adolescent patients with IBD.

Keywords Health related quality of life � Adolescent �IMPACT III � Inflammatory bowel disease

Introduction

The symptoms of inflammatory bowel diseases (IBD) can

dramatically interfere with daily life. The adolescent

patient with Crohn’s disease (CD) may have concerns

regarding short stature, delayed puberty, tiredness, loss of

energy and feeling restricted in pursuing daily activities

like regular school attendance or sports. Patients suffering

from UC are more disturbed by gastrointestinal symptoms

G. Engelmann (&)

Department of Pediatrics, Lukas Hospital, 41464 Neuss,

Germany

e-mail: [email protected]

G. Engelmann � D. Erhard � M. Petersen � G. F. Hoffmann

Department of Pediatrics, University Medical Center, University

of Heidelberg, Heidelberg, Germany

P. Parzer � F. Resch � R. Brunner

Department of Child and Adolescent Psychiatry, University of

Heidelberg, Heidelberg, Germany

A. A. Schlarb

Faculty of Psychology and Sports Science, University of

Bielefeld, Bielefeld, Germany

H. Lenhartz

Catholic Children’s Hospital Wilhelmstift, Hamburg, Germany

A. Richterich

Department of Psychosomatics in Children and Adolescents,

University Medical Center Hamburg-Eppendorf, Hamburg,

Germany

A. Richterich

Department of Child and Adolescent Psychiatry, Psychotherapy

and Psychosomatics, HELIOS St.-Josefs-Hospital Bochum-

Linden, Bochum, Germany

123

Child Psychiatry Hum Dev

DOI 10.1007/s10578-014-0471-5

like bloody diarrhea, flatulence, urge or tenesms [1]. All

patients have worries about relapses, future health prob-

lems, medical tests and treatments as well as the impact of

their disease on their families [2]. Obviously, these

symptoms reduce the health related quality of life

(HRQoL) in adolescents [3, 4]. In large studies the reported

quality of life (QoL) in adolescents with IBD was signifi-

cantly lower compared to control groups and to the general

population [5].

Quality of life is defined by the WHO [6] as ‘‘an indi-

vidual’s perception of their position in life in the context of

the culture and value systems in which they live and in

relation to their goals, expectations, standards, and con-

cerns’’. Health in general is a major factor of QoL. Ques-

tionnaires developed to address the influence of diseases on

QoL, measure the HRQoL. These can either be generic

(focus on health in general as a factor influencing QoL) or

disease-specific. HRQoL ‘‘describes health status from the

patients’ perspective and serves as a powerful tool to assess

and explain disease outcomes’’ [7]. For pediatric patients

with IBD the disease specific questionnaire ‘‘IMPACT’’

was published in 2002 [8] and is used in our study.

Disease activity in IBD patients is dependent on frequency

of diarrhea, blood loss, weakness due to active inflammation

and other aspects of the disease. With pediatric Crohn’s

Disease Activity Index (PCDAI) [9] and pediatric Ulcerative

Colitis Activity Index (PUCAI) [10] two powerful tests have

been developed that enable pediatric gastroenterologists to

classify the burden of disease in children with IBD due to easy

to asses values. Both tests have proven reliable and are widely

used in studies on children and adolescents with IBD. The

PCDAI consists of subjective reporting of stool pattern,

degree of abdominal pain and general well-being, presence of

extraintestinal manifestations, physical examination find-

ings, height, weight and laboratory tests (ESR, haematocrit,

albumin). The PUCAI includes abdominal pain, rectal

bleeding, stool consistency and number of stools per 24 h,

nocturnal stools and the activity level.

Various studies have demonstrated that children and

adolescents with chronic medical illness carry a two to four

times greater risk for psychosocial and psychiatric prob-

lems than the general population [11–13]. However, com-

pared to individuals with other chronic diseases like cystic

fibrosis or diabetes mellitus, children with IBD were more

at risk [14, 15]. Patients with IBD are at a high risk for

difficulties in behavioral and emotional functioning [16]. In

a study with 15 IBD patients aged 9–14 years, Szajnberg

et al. [17] reports a rate of up to 73 % for psychiatric

comorbidity, especially anxiety and mood disorders.

Studies regarding pediatric and adolescent IBD have shown

that direct symptoms of disease (e.g. diarrhea, abdominal

pain) have a negative effect on the QoL and that QoL is

also influenced by associated problems as delayed puberty,

below average stature, fear of side effects of medications,

regular medical tests (e.g. blood tests, colonoscopies) and

long periods of absence from school [3, 18]. In a com-

prehensive review, Szigethy et al. [19] lists studies that

found higher rates for depression and anxiety in IBD

patients and discusses several psychological and biological

explanations for these findings. Furthermore, Szigethy

reviews the connection between health status and QoL,

stating that ‘‘the patient’s current health status is believed

to have the greatest influence on responses to the IMPACT

questionnaire’’ as a disease specific HRQoL-instrument.

Treating adolescents with IBD at the Department of Pedi-

atrics in the University Medical Center and at the Depart-

ment for Child and Adolescent Psychiatry, University of

Heidelberg, the authors wondered if alterations in QoL

were also connected to psychiatric comorbidity, because

many patients required help from both departments. Thus,

we have conducted a prospective study, aiming to compare

the influence of psychiatric comorbidity and disease

activity on the HRQoL in a representative sample of ado-

lescent patients with IBD. Structured parent and patient

interviews, IMPACT-III and EQ-5D patient questionnaires

and disease activity indices PUCAI and PCDAI were

analyzed. The study sought to make clear which of these

two aspects has the greater influence on HRQoL.

Methods

Participants

A cross-sectional survey was performed. All patients with

IBD, treated at the Department of Pediatric Gastroenter-

ology at the University Children’s Hospital Heidelberg that

fulfilled the inclusion criteria were approached and asked

to participate. Inclusion criteria were: confirmed IBD and

age between 10 and 18 years and sufficient skills in the

German language. All patients were recruited with

informed consent.

Procedure

Anthropometric data (age, body weight, height) were

measured and all patients underwent physical examination

by an experienced pediatrician. A complete laboratory

work-up (white blood cell count, c-reactive protein,

erythrocyte sedimentation rate (ESR), creatinine and

albumin) was performed. Pediatricians filled out a struc-

tured report form for clinical evaluation. A child and

adolescent psychiatrist performed a structured parent and

patient interview on psychopathology. Patients and their

parents filled out self-report questionnaires including the

IMPACT-III and EQ-5D.

Child Psychiatry Hum Dev

123

Measures

Inflammatory bowel disease activity was measured using

standardized tests: The PCDAI for CD and PUCAI for UC.

In PCDAI increasing scores are noted with increasing

disease severity (score \11: no disease activity, score of

11–30: mild disease activity, score[30: moderate to severe

disease activity). The PUCAI includes (1) abdominal pain,

(2) rectal bleeding), (3) stool consistency of most stools,

(4) number of stools per 24 h, (5) nocturnal stools and (6)

the activity level. For the index averaging the last 48 h is of

relevance. The maximum score is 85 (\10: remission,\30:

mild disease activity, 30–65: moderate and [65 points:

severe disease activity).

An experienced child- and adolescent psychiatrist per-

formed the patient- and parent interviews. Psychopathol-

ogy was documented using the Clinical Assessment Scale

for Child and Adolescent Psychopathology (CASCAP)

[20]. The CASCAP is a standardized protocol for psy-

chopathology in children and adolescents, using data

derived from patient and parent interviews. Psychiatric

diagnoses were based on Diagnostic and Statistical Manual

of Mental Disorders (DSM) IV-criteria [21].

Patient questionnaires included the IMPACT-III, a dis-

ease specific HRQoL questionnaire established for children

and adolescents with IBD, and the EQ-5D. The IMPACT-

III is a disease-specific HRQoL-instrument that has been

translated into German from the original English (Canada)

version [4] according to the criteria of Brislin [22]. This

self report questionnaire is used to measure health-related

problems and concerns in IBD patients and contains the

following domains: IBD symptoms (abdominal pain, diar-

rhea, blood in stool), body image (height, weight, look),

social functioning (e.g. daily activities, friendships, wor-

ries), emotional functioning (e.g. worries about a flare up,

chronic condition, angriness), systemic symptoms (energy,

tiredness), treatments and interventions (e.g. operations,

taking medication). Every question has five possible

answers to which 1-5 points have been assigned. Points for

each answer are summed for the total score; the maximum

score is 175 points. The EQ5D is a standardized Instrument

to measure generic QoL in 5 dimensions and one 100 mm

visual analogue scale. In the 100 mm visual analogue

scale, high values represent high QoL with expected values

in a reference population ranging from 77 to 83 [23].

Statistical Methods

Means and standard deviations were calculated from the

following parameters: age, time intervals and score points.

The student’s t test was used to assess statistical signifi-

cance of the data. To determine effects of different items

on the quality of life an analysis of variance (ANOVA) was

used.

In boxplots, the boundaries of the box are Tukey’s

hinges (25th and 75th percentile), the median is identified

by a horizontal line. The length of the box is the inter-

quartile range (IQR) computed from Tukey’s hinges. Val-

ues more than 1.5 IQR from the end of the box are plotted

as single points. The last value within 1.5 IQRs defines the

length of the whisker.

All quantitative data analyses were conducted using the

Statistical Package for Social Sciences (SPSS Version 19

for Windows, SPSS Inc., Chicago, IL, USA). After creating

a list of variables, data was entered into charts of SPSS for

Windows 19.0 (SPSS Inc., USA). Stata 13 was used to

perform the analyses.

The local ethic committee approved the study protocol.

Written informed consent was obtained for all patients.

Results

Patients

All 50 adolescent IBD patients treated at our center at the

time of the study agreed to participate. Three patients were

excluded based on lack of appropriate German language

skills. Of the 47 remaining adolescents, 27 were male, 21

were suffering from CD and 26 from UC. The mean age at

the time of the study was 15.2/12 years (SD 1.8/12), the

mean age at onset 11.5/12 years. The male/female ratio

was 11/10 for CD and 16/10 for UC, respectively

[v2(1) = 0.399, p = 0.528; cf. Table 1].

The mean duration of treatment at the time of the study

was 3.5/12 years (SD 2.42) with an average period of

symptom onset prior to diagnosis of 5 months (cf.

Table 1). 13 patients (27 %) had a positive family history

of IBD. Out of the 47 patients, 11 (23.4 %) had previously

been in contact with a child and adolescent psychologist or

psychiatrist.

Disease Activity

According to the PCDAI and PUCAI, 24 adolescents (cf.

Table 2) had no current disease activity (12 CD and 12 UC

patients), 12 had mild (6 CD, 6 UC) and 11 moderate or

severe activity (3 CD, 8 UC). Results showed no significant

difference in disease activity between the two disease

groups [v2(2) = 1.76; p = 0.415]. Adolescents suffering

from CD did not significantly differ from patients with UC

regarding ‘‘age at presentation’’ (t = 0.67, df = 45,

p = 0.506) or ‘‘duration of treatment’’ (t = 1.24, df = 45,

p = 0.22).

Child Psychiatry Hum Dev

123

Health Related Problems and Concerns (IMPACT-III)

In the disease specific HRQoL questionnaire (IMPACT-III)

all patients reported difficulties and ‘‘every day problems’’.

Most common were ‘‘worries that the illness just doesn‘t

go away’’; ‘‘feeling it is unfair to have that illness’’ and

problems related to diarrhea. Patients with psychiatric

comorbidity had significantly more disease related prob-

lems and difficulties as measured by the IMPACT-III,

75.91 versus 62.46 respectively (two-tailed t test

p = 0.006), cf. Table 5.

Psychiatric Comorbidity

In the structured psychiatric interview using the CASCAP

manual and DSM IV criteria, 61.9 % of patients with CD

and 50 % of adolescents with UC fulfilled criteria for one

or more psychiatric disorders (cf. Table 3). Adjustment

(n = 12) and major depressive disorders (n = 8) were the

most common diagnoses. Taken together, 55.3 % of ado-

lescent patients with IBD (26 of 47) suffered from psy-

chiatric disorder according to DSM IV criteria. In detail, no

significant difference between patients with CD and UC

according to the total number of patients with DSM IV

relevant disorders was found [v2(1) = 0.666, p = 0.414,

cf. Table 4]. Girls showed a higher prevalence of psychi-

atric disorders than boys, although the difference was not

statistically significant [70 vs. 45 %, v2(1) = 3.04,

p = 0.081]. Adolescents with psychiatric diagnoses

showed higher parental-scored SDQ difficulties scores than

those without (t = 2.78, df = 45, p = 0.008).

A logistic regression showed no influence of ‘‘duration

of treatment’’ (p = 0.526) and ‘‘age at presentation’’

(p = 0.178) on the presence of a DSM IV-relevant

disorder.

Of the 26 patients with a current diagnosis of one or

more behavioral and emotional problems, only 7 (26.9 %)

had previously been in contact with a child and adolescent

psychiatrist or psychotherapist.

Influence of Disease Activity and Psychiatric

Comorbidity on Health-Related Problems and Concerns

A higher disease activity was associated with higher self-

ratings in the Impact-III questionnaire for health-related

problems and concerns. Patients with psychiatric comor-

bidity showed more health-related problems and concerns

than patients without, regardless of the disease activity

(none, low or high; cf. Fig. 1). The extent of health-related

problems and concerns was also influenced by disease

Table 1 Patients characteristics

Crohn’s

disease

n = 21

Ulcerative

colitis

n = 26

Total

Male/female 11/10 16/10 27/20

Mean age at diagnoses (years) 11.7/12 11.4/12 11.6/12

Mean age at time of the study

(years)

15.0 15.4/12 15.2/12

Average duration of symptoms

before diagnoses (months)

6.6 4.0 5.0

Already in contact with

psychologist or psychiatrist

(no/yes)

18/3 18/8 36/11

Table 2 Disease activity measured as PCDAI in patients with Cro-

hn’s disease and PUCAI in patients with ulcerative colitis

(v2 = 1.4133; Pr = 0.493)

IBD Disease activity Total

No/remission Mild Moderate

to severe

PCDA \11 11–30 [30

PUCAI \10 10–30 [30

Crohn’s disease (n) 12 6 3 21

Ulcerative colitis (n) 11 8 7 26

Total 23 14 10 47

Table 3 Diagnostic and statistical manual of mental disorders

(DSM) IV diagnoses in the 26 patients with psychiatric comorbidity

Diagnoses Total CD/CU Percentage

Adjustment disorders 12 6/6 25.6

Major depressive disorder 8 5/3 17.0

Anxiety disorder 3 2/1 6.4

Learning/developmental disorders 2 0/2 4.2

Attention deficit/hyperactivity

disorder

1 0/1 2.1

Total 26 of 47 55.3

According to DSM-IV criteria, 26 of 47 or 55.3 % of all patients

showed one or more psychiatric disorder, mainly adjustment and

emotional disorders

Table 4 Number of patients with DSM IV relevant diagnoses

Inflammatory bowel disease DSM IV relevant disorders

No Yes Total

Crohn’s disease (n) 8 13 21

% of patients with CD 38.10 61.90

Ulcerative colitis (n) 13 13 26

% of patients with UC 50 50

Total 21 26 47

The difference between patients with CD and UC was not significant

in v2 test (v2 = 0.666)

Child Psychiatry Hum Dev

123

activity (cf. Table 5). Calculating a multi-factor analysis of

variance, both ‘‘disease activity’’ [F(2,41) = 6.12,

p = .005, partial g2 = .23] and ‘‘psychiatric morbidity’’

[F(1,41) = 4,91, p = .032, partial g2 = .11] had a signif-

icant effect on health-related problems and concerns as

measured by the IMPACT-III. When focusing on QoL as

measured by the EQ5D 100 mm visual analogue scale, the

disease activity showed a significant main effect

[F(2,41) = 12.41, p = .0001, partial g2 = .38] and a sig-

nificant interaction between disease activity and psychiatric

comorbidity [F(2,41) = 5.34, p = .0087]. Post hoc pair

wise comparisons showed that psychiatric comorbidity

affects the QoL only for patients with mild disease activity

(cf. Fig. 2). Taken together, disease activity as well as

psychiatric morbidity showed a significant influence on

health related problems and concerns. Especially for the

group of adolescents with mild disease activity, psychiatric

comorbidity seems to have an important impact on

HRQoL, as the IMPACT-III score differed significantly

and was significantly higher for patients with a DSM-IV

diagnosis compared to patients without a psychiatric

comorbidity (cf. Fig. 1).

Discussion

To date, only a limited number of studies address the

influence of psychiatric comorbidity on HRQoL in chron-

ically ill adolescents. Most of these are limited by small

sample size [3–5, 8].

In this study, we investigated 47 adolescent patients

with IBD. All patients eligible for this study could be

enrolled ensuring a comprehensive survey on our patient

population and reducing selection bias. In this study, more

males than females (57 vs. 43 %) participated, which is in

line with that reported by Szigethy et al. [24]. The ratio of

patients suffering from UC and CD was in accordance to

other studies [25]. 55 % of patients were diagnosed with

UC, 45 % with CD. 62 % of the patients with CD and

50 % of patients with UC suffered from psychiatric

comorbidity, mainly adjustment and major depressive

disorders. This finding is within the range of other reports

with smaller patient samples [17, 25, 26] or adult patients

[27].

In line with other studies, neither the age of onset of the

IBD, nor the duration of the disease had a significant

influence on the development of a psychiatric disorder [24,

26]. In contrast to the high prevalence of patients with

Fig. 1 Health related problems and concerns (IMPACT III) related to

different disease activities. Disease activity is divided into three

groups (none/absent, mild/low activity, or moderate/severe activity).

Especially in the group with mild activity, psychiatric morbidity

results in more problems and concerns (IMPACT III) and lowers

HRQoL

Table 5 Health related problems and concerns measured by the IMPACT-III questionnaire

DSM IV psychiatric

disorder

Disease activity Total

None Low High

No (n = 21) 59.6 ± 14.1 60.4 ± 6.1 78.7 ± 18.3 62.5 ± 14.4

Yes (n = 26) 65.2 ± 12.14 74.2 ± 13.1 93.3 ± 23.5 76.0 ± 19.3

Disease activity is measured with PCDAI in patients with Crohn’s Disease and PUCAI in patients with Ulcerative Colitis. Higher scores

represent more problems and difficulties, patients with a psychiatric morbidity have higher IMPACT-III ratings (p = 0.06)

Fig. 2 Post hoc pairwise comparisons of EQ5D demonstrate that

psychiatric co-morbidity affects the QoL only for patients with mild

disease activity

Child Psychiatry Hum Dev

123

psychiatric comorbidity in our study, only 11 of 47 (23 %)

had ever been in contact with a psychiatrist or a

psychologist.

As part of the KIGGS-study, which determined the state

of health of children and adolescents in Germany in 2006,

the BELLA-study asked 2,863 families with children or

adolescents about symptoms in different fields, including

psychiatric disorders’’ [28]. In 12.2 % of respondents there

were indications of a psychiatric disorder, 9.6 % most

likely had a psychiatric disorder. Similarly, Dopfner et al.

[29] found the general prevalence of psychiatric disorders

in children and adolescents to be around 18 %. In our

study, the number of patients with a psychiatric disorder is

much higher (55 %) which emphasizes the need to deal

with the quality of life of IBD patients and psychiatric

comorbidity. This is in line with other studies [11–13]. As a

result of these findings, we have implemented a low

threshold psychiatric liaison service for patients and their

families as part of our pediatric outpatient clinic for IBD.

The incidence of a psychiatric diagnosis in female

patients is 70 % compared to 45 % in males. That is sim-

ilar to a finding in another study by Szigethy et al. [30]

where female IBD adolescents had a higher risk for

depression compared to male patients. Another study found

a high percentage of anxiety disorders in patients with CD

[31]. Andrews et al. [32] reported a 33 % prevalence of

psychiatric disorders in adults with CD and 34 % in adults

with UC. Our data show an even higher burden of psy-

chiatric comorbidity in adolescent patients.

In our study the reported HRQoL in adolescent IBD

patients with psychiatric comorbidity was significantly

lower compared to those without a psychiatric comorbidity

(cf. Table 5). Three different explanations may contribute

to an understanding of this effect. Psychiatric comorbidity

can be seen as an additional burden lowering HRQoL. An

alternative hypothesis would be that, if disease activity has

an impact on HRQoL, it is more likely for these patients to

develop depressive symptoms, anxiety or adjustment dis-

orders. Finally, as a third rationale, cytokines, other

inflammatory and immune parameters or side effects of

medication could affect a vulnerable subgroup of patients

more than others, with a direct biological impact on brain

physiology evoking behavioral changes and psychosocial

consequences.

The multi-factor analyses of variance showed that dis-

ease activity had a major influence on HRQoL. This is in

line with previously reported findings [19] Disease activity

and psychiatric comorbidity together contributed signifi-

cantly to the amount of health-related problems and con-

cerns in the IMPACT III test, explaining 30 % of the

variance. Only in the subgroup of patients with mild dis-

ease, the psychiatric comorbidity contributed significantly

to the HRQoL. Our hypothesis to explain this effect can be

summarized as follows: in the extreme cases of no disease

activity (remission) and moderate or severe disease activ-

ity, the impact of disease activity on HRQoL overrides any

other effect (flooring/ceiling effect). For a subgroup of

patients who show a different coping style, with more

tendencies to depressive withdrawal and trait anxiety

independent of actual disease activity, these psychological

parameters show their effect on HRQoL. This group would

profit most from psychotherapeutic interventions, and it

should be a concern of future studies to evaluate treatment

response in relation to disease activity.

Although pediatric gastroenterologists are aware of

potential psychiatric comorbidity and compromised

HRQoL in IBD patients, in daily gastroenterology practice

this has a minor influence on therapy decisions. As pedi-

atric gastroenterologists are not trained to evaluate psy-

chiatric comorbidity, it is not easy for them to find out

which patient needs psychosocial or psychotherapeutic

help. The main focus of actions is optimizing therapy to

achieve remission, if possible, or at least alleviate symp-

toms and reduce disease severity. Our results imply rec-

ommendation for screening for psychiatric comorbidity

and the need for easy accessible support by a trained child

and adolescent psychiatrist or for example through struc-

tured consultation/liaison services.

To date, it is widely accepted that IBD in adolescents

with all its implications will raise the vulnerability for

psychiatric comorbidity [14, 27]. Adolescents with IBD are

at a very high risk for clinically relevant emotional or

behavioral problems. Since adjustment disorders account

for almost half of the present clinically relevant problems,

models for effective coping with these chronic diseases

need to be developed. Disease specific HRQoL instruments

(IMPACT-III) can support the pediatrician with informa-

tion on the course of the disease and with therapeutic

decisions. Generic screening instruments (SDQ) for psy-

chiatric disorders exist and can help to identify adolescents

in need.

Health-related quality of life was measured only at one

single time point. Therefore changes of the HRQoL over

time in association with changes in the severity of IBD

cannot be predicted from our data [33].

Furthermore, we can not make any judgments to trait

coping styles or the direction of effects based on cross-

sectional data. The study is a single center study. Diag-

noses and treatment of children with IBD were performed

in line with national and international standards [34, 35],

however an influence of the treatment practice in our centre

on the outcome of the study cannot be excluded.

In conclusion psychiatric comorbidity is a major prob-

lem in adolescent patients with IBD, irrespective of disease

activity. HRQoL in adolescents with IBD is influenced

by both disease activity and psychiatric comorbidity.

Child Psychiatry Hum Dev

123

However, disease activity contributes more to HRQoL than

psychiatric comorbidity in patients that are in remission or

suffer from high disease activity. The number of patients in

our setting with psychiatric comorbidity underlines the

need for a better understanding of the interaction of chronic

diseases and psychiatric diseases in adolescents. Further-

more, this confirms the importance of a multidisciplinary

treatment of adolescent patients with IBD including a child

psychiatrist. Only 23 % of the families participating in this

study had ever received specialized help in this field,

though 55 % had a psychiatric disorder based on DSM IV

criteria. Therefore, the need for accessible and acceptable

professional (psychotherapeutic and/or psychiatric) help is

obvious. New models of cooperation between child and

adolescent psychiatrist/psychotherapists and pediatricians

must be established to support IBD-affected patients and

their families.

Summary

Health-related quality of life in adolescents and children

with IBD was significantly reduced in patients with psy-

chiatric comorbidity. In all patients, psychiatric comor-

bidity together with disease activity contributed to a

reduction in quality of life, but the impact of disease

activity overrides any other effects when disease activity is

very high or very low. In addition to somatic care, there is a

need for accessible and acceptable, preferably structured

professional (psychotherapeutic and/or psychiatric) help

for adolescent patients with IBD.

Acknowledgments This study was supported by a Grant from the

Dietmar Hopp Stiftung.

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