Factors associated with health-related quality of life in pediatric cancer survivors

Pediatr Blood Cancer 2007;49:298–305

Factors Associated With Health-Related Qualityof Life in Pediatric Cancer Survivors

Kathleen A. Meeske, PhD,1*{ Sunita K. Patel, PhD,2{ Stephanie N. Palmer, PhD,1§

Mary B. Nelson, MS, CPNP,3{ and Aimee M. Parow, BS1#

INTRODUCTION

Modern oncology advances have resulted in improved survival

rates for most cancers, with childhood cancer demonstrating one of

the most dramatic improvements [1]. The overall survival rate for

childhood cancer is now approximately 75% [2]. We are cautioned,

however, that even after cure, cancer can be a ‘‘chronic condition’’

[3]. Specifically, two-thirds of survivors can be expected to

experience at least one late effect that may impair quality of life,

while as many as one-quarter experience a severe or life-threatening

late effect [4]. Subsequently, survivors of childhood cancer, their

families, and medical providers are obliged to continue appropriate

surveillance of the survivors’ health based on their expected risks

[5]. While the structure and process of transitioning survivors

who have turned adult age to appropriate care facilities remains

problematic, pediatric cancer centers increasingly establish pro-

grams for post-treatment clinical follow-up [6,7].

Long-term survivorship programs have a unique opportunity to

investigate the impact of cancer and its treatment on survivors across

the developmental span. Some investigators suggest that research

objectives should be a major component of such programs, as data

from longitudinal clinical follow-up are expected to inform

clinicians about long-term risk-benefit ratios of newer treatments

[5,8].

Although still not without selection bias, standardized health-

related quality of life (HRQOL) measures administered during

routine follow-up visits may capture a broader range of participants

relative to mailed survey questionnaires, a common sampling

method utilized in survivorship research studies [9]. For example,

ethnic minority populations traditionally have lower response rates

to mailed surveys [10] and subsequently are underrepresented in

such studies [9]. Given the disparities in health outcomes between

Caucasians and minority groups [1], it cannot be assumed that

HRQOL outcomes are equal among ethnic groups and this issue

warrants empirical investigation.

Approximately 60% of the patient population at the cancer

center at which this study was conducted identify themselves as

Hispanic. Given this ethnic make up, we anticipated the ability to

represent the Hispanic survivors in our HRQOL data, and to

evaluate potential group differences in outcomes. The purpose of

this study was to describe HRQOL in pediatric cancer survivors

attending a long-term follow-up clinic and to identify demographic

and disease/treatment-related factors associated with poor quality of

life outcomes.

METHODS

Subjects

English and Spanish-speaking pediatric cancer survivors, age 8–

18 years of age, who attended the long-term information, follow-up,

and evaluation (LIFE) clinic at CHLA between January 1, 2002 and

December 31, 2002 were eligible for this study. Participants were

required to be cancer free, at least 5 years from diagnosis and off-

treatment for a minimum of 2 years. Using clinic rosters, we

Background. Childhood cancer survivors are at risk for lateeffects of disease and treatment that may be attributed to multiplecauses. This study describes health-related quality of life (HRQOL) inchildhood cancer survivors and identifies factors related to poorquality of life outcomes. Procedure. Patients age 8–18 years, whoattended the long-term information, follow-up, and evaluation (LIFE)clinic at Childrens Hospital Los Angeles during a 1-year time-periodwere eligible for the study. Eighty-six survivors (mean time off-treatment¼7.8 years) completed the Pediatric Quality of LifeInventory 4.0 Generic Core Scales, a LIFE Clinic Intake Question-naire and rated their fatigue using a 10-point scale. Oncology nursesindependently rated subjects’ late effects using a 3-point severityscale. Linear regression procedures were used to evaluate theassociation between demographic and medical factors and HRQOL.

Results. Fatigue and more severe late effects were associated withpoorer physical functioning (fatigue, P<0.02; late effects, P<0.01).Fatigue, ethnic minority status, and a brain tumor diagnosiswere associated with poorer psychosocial functioning (fatigue,P<0.0001; minority status, P<0.04; brain tumor, P<0.01). Fatiguewas the only factor related to both poor physical and psychosocialHRQOL. Conclusions. Long-term follow-up clinics for childhoodcancer survivors are in a unique position to monitor HRQOL overtime. Factors associated with poorer HRQOL include fatigue, ethnicminority status, a brain tumor diagnosis, and more severe late effects.Future studies need to clarify relationships between ethnicity,socioeconomic status (SES), and HRQOL in cancer survivors. PediatrBlood Cancer 2007;49:298–305. � 2006 Wiley-Liss, Inc.

Key words: childhood cancer survivors; ethnicity; fatigue; late effects; quality of life

� 2006 Wiley-Liss, Inc.DOI 10.1002/pbc.20923

——————1HOPE Program, Childrens Hospital Los Angeles, Los Angeles, CA;2City of Hope National Medical Center; 3Childrens Hospital Los

Angeles

This study was performd at Childrens Hospital Los Angeles, Los

Angeles, CA.

{Epidemiologist/Nurse Researcher.

{Neuropsychologist.

§Psychologist.

{Pediatric Nurse Practitioner.

#Research Assistant.

Grant sponsor: NCI training; Grant number: T32 CA90661.

*Correspondence to: Kathleen A. Meeske, Childrens Center for Cancer

and Blood Diseases MS #54, Childrens Hospital Los Angeles, 4650

Sunset Blvd. MS #54, Los Angeles, CA 90027.

E-mail: [email protected]

Received 27 February 2006; Accepted 9 May 2006

identified 118 eligible survivors. Thirty-one survivors with incom-

plete data and one with Down syndrome were ineligible, leaving 86

(73%) eligible for this study. The Institutional Review Board at

CHLA approved all study procedures, including a waiver of

informed consent, in accordance with requirements established by

the US Department of Health and Human Services.

Questionnaire Data

In this retrospective study, we analyzed questionnaire and

clinical data that were collected during the child’s annual clinic visit.

1. The LIFE Clinic Intake Questionnaire, developed by the

clinicians in the LIFE program, collects demographic and

health status information. The questionnaire includes a single

item from the SF-36 scale [11] that asks the child to rate his/her

‘‘overall health’’ status as excellent, good, fair, or poor. Two

additional items, adapted from the National Comprehensive

Cancer Network clinical practice guidelines, ask the child to

rate his/her fatigue over the past 4 weeks and current level of

pain using a 0–10 analog scale (0¼ no pain/no fatigue;

10¼most pain ever/most fatigue ever) [12].

2. The PedsQLTM 4.0 Generic Core Scales assess HRQOL,

including physical (eight items), emotional (five items), social

(five items), and school functioning (five items) [13]. The

PedsQLTM Psychosocial Summary Scale contains the emo-

tional, social and school functioning subscales while the

physical summary scale contains the physical subscale. The

child uses a 5-point Likert scale to rate how much of a problem

each item has been for him/her over the past 7 days (0¼ never a

problem to 4¼ almost always a problem). Responses are

reverse-scored and linearly transformed to a 0–100 scale, with

higher scores indicating better HRQOL.

The PedsQLTM 4.0 Generic Core Scales have been tested with

pediatric oncology patients, including Spanish-speaking samples,

and have demonstrated strong internal consistency, reliability, and

validity [14]. The Cronbach alpha coefficient in this study was 0.91

for the full scale, 0.82 for the physical functioning scale, and 0.88 for

the psychosocial functioning scale. Patients completed a devel-

opmentally appropriate (child 8–12 years; adolescent 13–18 years)

English or Spanish version of the PedsQLTM.

Clinical Data

A research assistant extracted the following information from

each child’s medical record: diagnosis, date of diagnosis, date of last

cancer treatment, a summary of cancer treatment, and a list of

disease/treatment-related late effects.

The Late Effect Severity Scale, developed by experts in the area

of childhood survivorship [15] uses a 3-point scale to rate severity of

late effects. Severity ratings are defined as follows: 1¼ no limitation

of activity, requires no special medical attention, no cosmetic

differences apparent (e.g., no medical late effects, slight scarring

post-biopsy); 2¼mild restriction of daily activity, mild cosmetic

changes, some medical attention or equipment required (e.g.,

hypothyroidism, abnormally short stature); or 3¼ significant

restriction on daily activity, significant cosmetic changes, signifi-

cant medical attention or equipment needed (e.g., cardiomyopathy,

gonadal failure). Two pediatric advanced-practice oncology nurses

independently reviewed the survivors’ medical records and scored

the severity of their late effects using this scale. The nurses reviewed

medical records together to resolve any discrepancies in scores.

Analyses

Using the National Comprehensive Cancer Network clinical

practice guidelines, we classified survivors with a fatigue score of 4

or higher as fatigued and coded those with a pain score of 4 or higher

as having ‘‘moderate to severe’’ levels of pain [12]. Analog fatigue

and pain scores were transformed into categorical variables.

Adequate response equivalence has been demonstrated for the

PedsQLTM Core Scales in English and Spanish; therefore we

combined these data [14].

Descriptive statistics (means, standard deviations, and frequen-

cies) were calculated for all variables. The outcome variables in this

study were the PedsQLTM total score, the physical functioning

score, and the psychosocial functioning score, which includes the

social, school, and emotional subscales. Linear regression proce-

dures were used to evaluate the association between demographic

and medical/treatment factors and HRQOL outcomes [16]. Multi-

variate regression procedures were used to develop a multivariate

model for the outcome variables. Tests of linear trend were

calculated by fitting a variable representing ordinal categories of

increasing exposure in the regression models [17]. All statistical

testing used an alpha of 0.05 (two-tailed). All data analyses were

conducted using SAS (Version 9.0).

RESULTS

Subjects

Participants included 51 males and 35 females, ranging in age

from 8 to 18 years (Table I). Forty-one of the 86 participants (48%)

were Hispanic. Twenty-two (26%) identified Spanish as the primary

language spoken in their home.

The child’s average age at diagnosis was 4 years. The vast

majority of the survivors had been off-treatment for 5–10 years.

Ninety-two percent rated their ‘‘overall health’’status as excellent or

good. Eighteen percent of the survivors reported fatigue; 9%

reported moderate to severe levels of pain. One-third of the patients

had seen a physician outside the cancer center in the past year. Sixty

percent experienced moderate to severe treatment-related late

effects. When we compared the 86 survivors in this report to the 32

survivors who attended the LIFE clinic but did not complete the

PedsQLTM forms (non-participants), we found that non-participants

were off-treatment longer than participants (mean time off-

treatment: participants¼ 7.8 years; non-participants¼ 9 years,

P-value¼ 0.03). Participants and non-participants did not differ

significantly on age at evaluation, ethnicity, diagnosis, age at

diagnosis, treatment, severity of late effects, ‘‘overall health’’ status,

pain, fatigue, or the frequency of doctor visits over the past year.

HRQOL in Cancer Survivors

Survivors’ PedsQLTM total, physical, and psychosocial func-

tioning mean scores were not significantly different than those

reported for healthy children (Table II) [14]. We found a positive

correlation between the survivors’ PedsQLTM total, physical, and

psychosocial functioning mean scores and their ‘‘overall health’’

status rating (r¼ 0.40–0.45).

Pediatr Blood Cancer DOI 10.1002/pbc

HRQOL in Pediatric Cancer Survivors 299

Univariate Analyses

PedsQLTM total, physical, and psychosocial functioning scores

were significantly lower (poorer HRQOL) for patients diagnosed

with a brain tumor (Table III). HRQOL scores also were signi-

ficantly lower for patients reporting fatigue, pain, or for those with

more severe late effects. Hispanic ethnicity was associated with

significantly lower PedsQLTM total and psychosocial functioning

scores. PedsQLTM physical functioning scores were significantly

lower for the survivors who had seen a doctor in the past year. Type

of treatment, time off-treatment, primary language spoken in the

home, and the subject’s current age were not related to PedsQLTM

total, physical, or psychosocial HRQOL scores.

Multivariate Analyses

In the final multivariate models, fatigue was associated with poor

QOL, including poorer physical and psychosocial functioning

(Table IV). A higher score on the late effects severity scale,

indicating more severe late effects, was significantly correlated with

poorer physical functioning but not with poorer psychosocial

functioning. A brain tumor diagnosis and non-Caucasian ethnicity

were associated with poorer psychosocial functioning.

With the PedsQLTM psychosocial subscales (Table V), we found

that fatigued survivors reported significantly poorer social, school,

and emotional functioning than the non-fatigued survivors

(Fig. 1). Interestingly, the non-fatigued survivors’ mean psychoso-

cial subscale scores were comparable to the mean scores for healthy

children. Brain tumor survivors scored significantly lower on the

PedsQLTM social functioning scale (indicating more problems) than

survivors of other cancers.

We found an association between ethnicity and several of the

psychosocial subscales. PedsQLTM school scores were significantly

lower (indicating more problems) for the Hispanic and non-

Caucasian survivors compared to the Caucasian survivors (Hispanic

survivors’ P-value¼ 0.0001 and other non-Caucasian survivors’

P-value¼ 0.001). PedsQLTM emotional functioning scores were

significantly lower for Hispanic survivors compared to non-

Hispanic survivors. Although the differences between the ethnic

groups were not significant for social functioning, PedsQLTM social

scores were lowest for the Hispanic survivors.


TABLE I. Demographic, Disease, and Treatment Characteristics

N (%)

Total 86 (100)Current age (years)

Mean (SD) 13.3 (2.9)8–10 18 (21)11–14 35 (41)15–18 33 (38)

EthnicityCaucasian 29 (34)Hispanic 41 (48)Other 16 (19)

GenderMale 51 (59)Female 35 (41)

Primary language spokenin the homeEnglish 59 (69)Spanish 22 (26)Other 5 (6)

Education�6th grade 30 (35)7th–8th grade 29 (34)9th–12th grade 27 (31)

DiagnosisLeukemia 31 (36)Lymphoma 16 (19)Wilms tumor 10 (12)Brain tumor 12 (14)Othera 17 (20)

Age at diagnosis (years)Mean (SD) 4.0 (2.6)Range 0–120–3 38 (44)4–5 27 (31)6–12 21 (24)

Cancer treatmentChemotherapy only 30 (35)Chemotherapy and surgery 22 (26)Chemotherapy, radiation,and surgery

19 (22)

Chemotherapy and radiation 9 (10)Surgery only 4 (5)Radiation and surgery 2 (2)Cranial irradiation 13 (16)

Time off-treatment (years)Mean (SD) 7.8 (2.5)Range 3–15<5 5 (6)5–9 63 (73)>10 18 (21)

Fatigueb 14 (18)Moderate to severe painc 7 (9)Late effect severity rating

Mild 36 (42)Moderate 27 (31)Severe 23 (27)

Overall health ratingExcellent 40 (48)Good 37 (45)Fair 5 (6)Poor 1 (1)

One or more doctor visit in the past year (yes) 28 (33)

aRetinoblastoma (n¼ 4); neuroblastoma (n¼ 3); rhabdomyosarcoma

(n¼ 5); germ cell tumor (n¼ 3); hepatoblastoma (n¼ 2) BMT¼ bone

marrow transplant; bNine missing fatigue rating; fatigue¼ fatigue

rating� 4; cTen missing pain rating; pain¼ pain rating� 4.

TABLE II. PedsQLTM 4.0 Generic Core Scalesa for CancerSurvivors and Healthy Children

PedsQLTM Generic Core Scales

Cancer

survivors

Healthy

sampleb

Mean (SD) Mean (SD)

Total score 81.4 (15.4) 83.4 (14.9)

Physical summary health 84.8 (16.9) 82.6 (19.5)

Psychosocial summary health 80.1 (16.2) 84.0 (15.6)

Emotional functioning 81.2 (18.9) 83.1 (18.6)

Social functioning 84.6 (19.1) 86.7 (18.4)

School functioning 74.6 (21.8) 79.4 (18.9)c

All t-test P-values >0.05; Healthy sample was accrued from a list of

patients who had attended an orthopedic clinic for broken bones or

fractures and were identified by the clinic nurse as having ‘‘returned to

health.’’ Average age of the 72 boys and 33 girls was 13.7 years [14];aSelf-report version; bHealthy sample, n¼ 105; cHealthy sample,

n¼ 63.

300 Meeske et al.


TABLE III. Association Between Self-Report PedsQLTM Scale Scores and Potential Covariates

PedsQLTM psychosocial

health score

PedsQLTM physical

health score

PedsQLTM

total score

P-valuea P-valuea P-valuea

Current age (years)

7–10 Reference group Reference group Reference group

11–14 0.59 0.61 0.60

15–18 0.12 0.52 0.15

Trend P-value 0.10 0.54 0.13

Ethnicity

Caucasian Reference group Reference group Reference group

Hispanic 0.02 0.35 0.04

Other ethnicity 0.26 0.89 0.35

Female gender 0.39 0.93 0.48

Primary Language spoken in the home

English Reference group Reference group Reference group

Spanish 0.08 0.09 0.06

Other 0.92 0.78 0.51

Education

�6th grade Reference group Reference group Reference group

7th–8th grade 0.30 0.44 0.31

9th–12th grade 0.12 0.93 0.23

Diagnosis

Leukemia Reference group Reference group Reference group

Wilms tumor 0.67 0.21 0.95

Brain tumor 0.02 0.03 0.02

Lymphoma 0.12 0.24 0.12

Other diagnoses 0.61 0.44 0.85

Age at diagnosis (years)

0–3 Reference group Reference group Reference group

4–5 0.30 0.75 0.46

6–12 0.62 0.39 0.86

Cancer treatment

Chemotherapy only Reference group Reference group Reference group

Surgery only 0.80 0.57 0.70

Radiation and surgery 0.51 0.32 0.41

Chemotherapy and surgery 0.46 0.92 0.60

Chemotherapy and radiation 1.00 0.91 0.97

Chemotherapy, radiation, and surgery 0.09 0.11 0.08

Cranial Radiation 0.15 0.06 0.08

Relapse 0.08 0.34 0.11

Time off-treatment (years)

<5 Reference group Reference group Reference group

5–9 0.64 0.35 0.52

>10 0.95 0.53 0.81

Trend P-value 0.73 0.89 0.83

Fatigue <0.001 <0.01 <0.001

Pain 0.009 0.05 0.009

Late effect severity rating

Mild Reference group Reference group Reference group

Moderate 0.06 0.03 0.04

Severe <0.01 0.001 0.001

Trend P-value <0.01 <0.001 <0.001

Overall health status

Excellent Reference group Reference group Reference group

Good 0.01 0.01 0.01

Fair/poor <0.01 <0.001 <0.001

Trend P-value <0.001 <0.0001 <0.0001

One or more doctor visit in the past year 0.44 0.04 0.25

aP-value for univariate linear regression coefficient.


DISCUSSION

Our finding that HRQOL scores for most pediatric cancer

survivors were similar to those reported for healthy children is

consistent with other published reports [18–21] and very encourag-

ing in light of the increasing numbers of children surviving cancer.

At the same time, there were higher risk subgroups within our clinic

sample.

While relatively few survivors in this study were fatigued, the

survivors who were fatigued experienced significantly poorer

physical, social, emotional, and school functioning than those

who were not fatigued. Although the underlying mechanisms of

persistent fatigue following cancer treatment are poorly understood

in pediatric and adult cancer survivors, studies consistently report a

negative relationship between fatigue and HRQOL [22–25].

Fatigue can have a negative impact on physical activity, mood,

memory/cognition, school performance, and socialization. In this

study, fatigue was the most powerful predictor of functional status

and HRQOL; a single self-report fatigue question was very effective

in the screening and identification of high-risk patients in the clinical

setting. Despite our limited understanding of post-treatment fatigue

there is sufficient data to warrant routine fatigue screening during

long-term follow-up. In cases of a positive fatigue screen, a more

comprehensive work-up should be conducted to identify and treat

underlying contributors toward the individual patient’s fatigue [12].

Consistent with other reports, the majority of the survivors in

this study experienced moderate to severe late effects [4]. While

increased severity of late effects was associated with a decrease in

physical functioning, there was no direct association between

severity of late effects and psychosocial functioning. Psychosocial

functioning tends to reflect the survivor’s subjective interpretation

of the cancer experience [26]; often, surviving cancer results in

a positive reassessment of life that does not match health status

[27–29].

Another possible explanation for this disparity is that the

participants in this study, who are all under the age of 18, may not

fully appreciate the long-term consequences of late effects on future

health [30]. For example, the full impact of gonadal failure, the

inability to conceive children, and lifelong dependence upon

artificial hormones, may not be fully appreciated until adulthood.

Similarly, the consequences of cognitive impairment on future

employment and socioeconomic potential are often not realized

until later in life [26]. Longitudinal studies with serial assessments

of HRQOL are needed to understand how developmental age


TABLE IV. Multivariate Models: PedsQLTM 4.0 Generic CoreScales

PedsQLTM Total Core Scale P-valuea

Fatigue (yes vs. no) <0.0001

Ethnicity

Caucasian Reference group

Hispanic <0.01

Other 0.04

Diagnosis

Leukemia Reference group

Lymphoma 0.39

Wilms tumor 0.70

Brain tumor <0.01

Other 0.67

PedsQLTM physical functioning subscale

Fatigue (yes vs. no) 0.01

Late effect severity score

Mild Reference group

Moderate 0.04

Severe 0.02

Trend P-value 0.01

PedsQLTM psychosocial functioning subscale

Fatigue (yes vs. no) <0.0001

Ethnicity

Caucasian Reference group

Hispanic <0.01

Other 0.04

Diagnosis

Leukemia Reference group

Lymphoma 0.38

Wilms tumor 0.35

Brain tumor <0.01

Other 0.99

aP-value for multivariate linear regression coefficient.

TABLE V. Multivariate Model: PedsQLTM 4.0 Psychosocial Subscales

School

functioning

Emotional

functioning

Social

functioning

P-valuea P-valuea P-valuea

Fatigue (yes vs. no) <0.0001 <0.0001 0.01

Ethnicity

Caucasian Reference group Reference group Reference group

Hispanic 0.001 0.01 0.06

Other 0.01 0.29 0.19

Diagnosis

Leukemia Reference group Reference group Reference group

Lymphoma 0.88 0.25 0.43

Wilms tumor 0.46 0.08 0.74

Brain tumor 0.13 0.10 <0.01

Other 0.69 0.73 0.86

aP-value for multivariate linear regression coefficient.

302 Meeske et al.

mediates appraisal and influences childhood cancer survivors’

emotional responses to treatment-related late effects.

The significant difference in psychosocial health outcomes

between Hispanic and Caucasian respondents in this study is, to our

knowledge, a new finding in the area of childhood cancer

survivorship. Ethnic disparities have been observed in studies of

health status among adult-onset cancer patients [31], with similar

emerging research in childhood cancer [32]; however, little is

known about ethnic or racial differences in HRQOL outcomes

among childhood cancer survivors. Since ethnic minorities

constitute a significant portion of the low socioeconomic status

(SES) groups in this country [33], it is possible that SES, and not

Hispanic ethnicity itself, accounts for the HRQOL differences in our

sample. Specifically, low-income Hispanic families may experience

greater stress in their daily lives [34], and our finding of lower

psychosocial health scores among Hispanic survivors may reflect

pre-morbid status. It is also possible that the cancer experience has

an additive impact on pre-existing SES-related stress. Additionally,

differences in cultural norms and values between ethnic groups

also must be considered as there may be differences in emotional

endorsement and reporting styles for psychosocial health [35].

To better isolate the various respective influences, it will be

necessary to compare psychosocial HRQOL outcomes in Hispanic

cancer survivors to their healthy Hispanic counterparts. A recent

study of race/ethnicity influences on outcomes in the Childhood

Cancer Survivor Study (CCSS) found that adverse outcomes

were not associated with minority status when adjusted for SES;

in fact, black survivors were less likely to report adverse mental

health [36].

Our analysis found that the ethnic differences in psychosocial

health were most prominent in the area of school functioning.

Again, this difference may not reflect cancer-related influences,

especially given the reports of higher school drop out rates and

overrepresentation of Hispanics in special education programs [37].

School difficulties in the healthy Hispanic population may relate to a

number of factors, including limited resources. Barriers to critical

knowledge and resources may have an even more detrimental

consequence in the case of childhood cancer survivors, where

the risk of learning difficulties increases the need for effective

educational advocacy by parents.

Based on our results, long-term survivors of pediatric brain

tumors are another group that are at high-risk for poorer psycho-

social HRQOL. This result is not surprising considering their

increased risk for neurocognitive, behavioral, and social impair-

ments, usually secondary to neurocognitive injury [38–41].

A limitation of our study was the inability to evaluate any

associations of family SES on the ethnicity-based HRQOL differ-

ences detected in our sample. Predominant language spoken at

home, used as a proxy estimate of SES, was not a discriminating

factor in this sample. Future studies should use more precise

measures of SES to better understand interactions between

ethnicity, other sociodemographic factors, and HRQOL outcomes

in childhood cancer survivors. A methodology that relies on

obtaining survivors’ HRQOL information during their visit may not

be generalized beyond the population of survivors attending such

clinics. Many studies of childhood cancer survivors, including this

one, are limited by single assessment in a cross-sectional sample, yet

HRQOL outcomes likely are dynamic and may fluctuate across the


Fig. 1. Fatigued cancer survivors compared to non-fatigued survivors and healthy children. [Color figure can be viewed in the online issue, which

is available at www.interscience.wiley.com.]


lifespan. While the consideration of limited generalizability of

results is important, empirical evaluation of survivors attending

long-term follow-up clinics allows repeated standardized measures

collected from the same individuals across time, providing critical

longitudinal research and clinical data as late effects increasingly

manifest or even resolve.

The focus of long-term clinics for survivors of childhood cancer

traditionally has been to monitor and treat the physical late effects

caused by cancer and its treatment. Yet the presence of physical late

effects is only one aspect of the cancer experience thought to affect

HRQOL. Family dynamics are often forever changed, and lingering

anxiety about future health and possibility of relapse or second

malignancy may color outlook on life. Routine administration of

standardized HRQOL measures in a clinic setting may provide a

time-efficient method of easily screening and detecting the need for

more detailed assessment and intervention. Results from a recent

survey of 1,020 cancer survivors revealed nearly half felt their non-

medical needs, including practical and emotional issues, were

unmet by health care providers [42]. A review of the patient’s

responses on HRQOL measures will prompt the clinician to further

query and address potentially problematic areas. Childhood cancer

survivors cannot obtain optimal health until a comprehensive

approach addresses their psychosocial needs as well as their

physical needs.

ACKNOWLEDGMENT

Dr. Meeske is supported by a NCI training grant, T32 CA90661

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Factors associated with health-related quality of life in pediatric cancer survivors