Assessment of health-related quality of life of adolescent cancer patients using the...

Pediatr Blood Cancer 2007;48:678–686

Assessment of Health-Related Quality of Life of Adolescent CancerPatients Using the Minneapolis-Manchester Quality of

Life Adolescent Questionnaire

Eric Wu, BA,1 Leslie L. Robison, PhD,2 Meriel E.M. Jenney, MD,3 Todd H. Rockwood, PhD,4

James Feusner, MD,5 Debra Friedman, MD,6 Robert L. Kane, MD,4 and Smita Bhatia, MD, MPH1*

INTRODUCTION

Improvements in risk-based therapy for childhood cancer have

resulted in 5-year survival rates approaching 80% [1], shifting the

focus to the health and well being of childhood cancer survivors, and

in particular, of adolescent survivors. The developmental needs

during adolescence include achieving a sense of identity, forming

relationships with peers, and establishing independence from

parents, and might be restricted by the cancer experience, affecting

the survivor’s self-esteem and social functioning [2–7]. The

uncertainty of recurrence, and the long-term consequences of

treatment [8] could have a significant impact on their health-related

quality of life (HRQL). While previous studies have attempted to

assess HRQL of adolescents with cancer [4,9–38], conclusions have

been limited by: (1) lack of standardized methods; (2) input from

proxies rather than patient; (3) use of generic surveys that do not

acknowledge adolescent cancer survivors’ special needs and

concerns; (4) examination of a limited number of HRQL domains;

(5) small sample size; or (6) lack of representative comparison

groups. As part of a Children’s Oncology Group (COG) research

initiative to characterize the Minneapolis-Manchester Quality of

Life (MMQL) Adolescent Form, a validated, comprehensive,

multidimensional self-report instrument [39], data were collected

from 362 adolescents with a history of cancer, and 134 healthy

adolescents with no prior history of cancer. Utilizing the MMQL

data we report the risk estimates for poor overall and domain-

specific HRQL for on- and off-therapy adolescent cancer patients

relative to healthy adolescents.

METHODS

Twenty institutions within the United States contributed patients

to this study (see Appendix). The institutional review boards at the

participating institutions approved the research protocol in

compliance with the Declaration of Helsinki. Patients and their

legal guardians signed informed consents approved by each local

Institutional Review Board. Eligibility requirements included (a)

age between 13 and 20 years; (b) ability to read English at the sixth

grade reading level; and (c) one of the following medical histories:

(i) diagnosis of cancer, and receiving treatment for two or more

months prior to study participation (on-therapy patients); (ii) past

history of cancer, with no treatment for at least 1 year prior to study

participation (off-therapy survivors); (iii) no history of cancer or

major chronic illness (healthy controls). Primary physicians gave

permission to contact patients and their parents. In all cases, the

initial contact with the study subject was made through the parents.

For on- and off-therapy patients, participating institutions attempted

to enroll consecutive patients seen at the treating institution.

Nonetheless, study participants represent a convenience sample,

since institutions did not systematically quantify the eligible patient

population. Healthy individuals from throughout the United States

were identified as part of control selection for another COG study,

using a method of random-digit dialing [40]. The healthy controls

for the current study originate from households that were contacted,

Background. Improved survival after childhood cancer hasshifted the focus to health-related quality of life (HRQL)—anunderstudied problem, especially among adolescents. Procedure.We assessed HRQL among adolescents utilizing a validated self-report tool, the Minneapolis-Manchester Quality of Life (MMQL)Adolescent Form, consisting of 46 items comprising seven domains:physical, cognitive, psychological and social functioning, bodyimage, intimate relations, and outlook on life, and computed anoverall QoL score. The MMQL Adolescent Form was administered to226 adolescent survivors of childhood cancer a median of 7.8 yearsfrom diagnosis (off therapy—median age: 16.2 years), 136 adoles-cent cancer patients undergoing therapy (on therapy—median age:16.4 years), and 134 healthy adolescents (controls—median age:15.5 years). Primary diagnoses included leukemia (46%), lymphoma

(26%), brain tumors (5%), and other solid tumors (23%). Results.Compared to healthy controls, on-therapy patients were at increasedrisk for reporting poor overall QoL [Odds Ratio (OR)¼3.3,P¼0.002)] and poor physical functioning (OR¼ 11.8, P<0.001).Off-therapy survivors did not differ significantly from healthycontrols for overall QoL (OR¼1.6, P¼ 0.5) or any HRQL domains.Female patients, both on- and off-therapy, were more likely to reportpoorer overall QoL, physical, psychological and cognitive function-ing as well as poorer body image when compared with male patients.Conclusions. While adolescent cancer patients undergoing activetherapy report poor physical functioning, there is no evidence oflong-term QoL sequelae. Pediatr Blood Cancer 2007;48:678–686.� 2006 Wiley-Liss, Inc.

Key words: adolescents; cancer survivors; QoL

� 2006 Wiley-Liss, Inc.DOI 10.1002/pbc.20874

——————1Division of Population Sciences, City of Hope National Medical

Center, Duarte, California; 2Department of Epidemiology and Cancer

Control, St. Jude Children’s Research Hospital, Memphis, Tennessee;3Department of Child Health, Llandough Hospital, South Glamorgan,

UK; 4Division of Health Services Research and Policy, University of

Minnesota School of Public Health, Minneapolis, Minnesota;5Division of Pediatric Oncology, Children’s Hospital of Oakland,

Oakland, California; 6Division of Pediatric Oncology, Fred Hutchinson

Cancer Research Center, Seattle, WA.

Grant sponsor: National Cancer Institute; Grant number: U10

CA098543.

*Correspondence to: Smita Bhatia, Children’s Oncology Group, PO

Box 60012, Arcadia, CA 91006-6012. E-mail: [email protected]

Received 6 January 2006; Accepted 20 March 2006

and determined to have children between the ages of 13 and

20 years, but who were not found to be appropriate age- and gender-

match for the original COG case control study. The MMQL

questionnaire was mailed to the healthy control participants. The

importance of self-report was emphasized in the instructions given

to the study participants.

Using a cross-sectional study design, we administered the

MMQL Adolescent Form to eligible subjects who had consented to

participate. Patients completed a self-administered questionnaire in

the clinic or a questionnaire was mailed to them, again emphasizing

the importance of self-report in the instructions provided to the

study participants. The MMQL Adolescent Form is a self-report

questionnaire whose sensitivity, validity, internal consistency, and

test-retest reliability have been demonstrated previously [39].

Specifically, construct validity of the MMQL instrument was

assessed using the Child Health Questionnaire Form (CHQ-CF-87),

and high correlation demonstrated between the MMQL scales and

similar CHQ domains. The MMQL Adolescent Form, specific for

adolescent survivors of childhood cancer, defines HRQL on an

individual’s physical, social, psychological, and cognitive function-

ing, as well as overall outlook on life. Higher scores on the MMQL

indicate minimal negative impact and thus greater HRQL.

Specifically, the MMQL Adolescent Form does not contain any

questions pertaining to the cancer therapy or the acute toxicities of

cancer therapy. Thus, while the instrument has been developed

specifically for cancer survivors, it is generic enough to be

administered in its entirety to a healthy control population (see

Table I for the items in the questionnaire). The MMQL Adolescent

Form uses 46 items, comprising seven quality-of-life (QoL)

domains—physical functioning, cognitive functioning, psycholo-

gical functioning, body image, social functioning, intimate

relations, and outlook on life—to explore the multifaceted aspects

of adolescents (Table I). Scoring on the MMQL Adolescent Form

ranges from one to five, with five indicative of maximal HRQL. We

computed an overall QoL score by summing the scores for all items,

and dividing the sum by the number of items in the questionnaire.

We report results of analyses comparing on-therapy patients to

healthy controls, off-therapy cancer survivors to healthy controls,

and within group comparisons for on- and off-therapy patients.

Comparison of means between the various groups was conducted

using analysis of variance (ANOVA). Clinically significant

difference in scores was defined as a difference in mean scores of

the two groups of interest equaling half a standard deviation of the

mean of the controls. In analyses using a dichotomous QoL variable,

poor QoL was defined as a score below the 25th percentile among

the gender-specific healthy control group. To calculate OR and

corresponding 95% confidence intervals (CI), as risk estimates for

poor HRQL for cancer patients when compared with healthy

controls, we conducted stratified analyses using logistic regression

for poor overall QoL and HRQL in the seven domains. Thus, we

stratified study participants by gender, age at completion of

questionnaire (13–14 years, 15–17 years, or 18–20 years), and

ethnicity (whites vs. non-whites), and examined the risk of poor

HRQL for patients with cancer (on- or off-therapy) when compared

with healthy controls. Additional multiple regression analyses,

restricted to cancer patients only, were conducted to identify sub-

populations at increased risk for poor HRQL. Variables in the model

included (i) primary diagnosis (leukemia, lymphoma, brain tumors,

and other solid cancers); (ii) age at completion of survey; (iii)

gender; (iv) race/ethnicity; and (v) time since diagnosis for cancer

survivor analysis (less than or greater than 7 years). Seven years

from the date of diagnosis was selected for two reasons: (i) the

cohort of survivors had been followed for a median of 7.8 years; (ii)

childhood cancer treatment averages 2 years, and 7 years from

diagnosis would offer a 5-year post-treatment period for early versus

late issues—thus allowing patients to achieve a relatively stable

Pediatr Blood Cancer DOI 10.1002/pbc

TABLE I. Minneapolis-Manchester Quality of Life ToolAdolescent Form

Physical functioning

Unable to do many activities because of health

Have a lot of energy for running or sports

Unable to do many activities because of arms or legs

Unable to keep up with others of their age when taking part in sports

Feel strong and healthy

Have a lot of energy

Prefer to walk rather than take part in games and sports

Feeling tired during the day

Need time during the day to rest

Psychological functioning

Worried about dying

Feeling frightened

Worried about things in general

Worried about their health

Feeling sad

Feeling nervous or anxious

Feeling inferior to most people

Feeling lonely

Feeling angry

Social functioning

Having similar hobbies to other people their age

Getting along with people their age

Having a lot in common with their friends

Have many close friends

Being together with others gives them a good feeling

Believing that people like to be with them

Cognitive functioning

Difficulty in concentrating at work or school

Difficulty with school work compared with others in class

Needing more help with school work than others in class

Difficulty in concentrating at school

Difficulty in remembering things at school/college

Homework or study is hard for them

Difficulty with reading or writing

Difficulty with math or calculations

Difficulty with concentrating at other times (compute/games/playing

cards/reading)

Body image

Liking their body the way it is

Being happy about the way they look

Feelings about their body development

Feeling uncomfortable about the way their body is developing

Being satisfied about their weight

Feeling that others think their body to be poorly developed

Outlook on life

Satisfied with the current life situation

Happy with the way things are

Happy with life in general

Intimate relations

Difficulty in making friends

Feel left out in groups of people their age

Feel confident when they are with people of opposite sex

Find it easy to have an intimate relationship

QoL in Adolescent Cancer Patients 679

state post-treatment. Participants with leukemia included patients

with either acute lymphoblastic leukemia (ALL) or acute myeloid

leukemia. Similarly, participants with lymphoma included those

with Hodgkin disease or non-Hodgkin lymphoma. The decision to

consolidate primary diagnoses into the broad categories of leukemia

and lymphoma was driven primarily by the smaller numbers of

patients with each diagnosis. Statistical analyses were conducted

using the Epilog Plus, Windows alpha version 1.00 [41]. All

reportedP-values are two-tailed and significance was set at less than

0.05.

RESULTS

Demographic and clinical characteristics for the 496 participat-

ing study subjects are provided in Table II. The median age at

diagnosis for the on-therapy cancer patients was 15.4 years, and the

median time between diagnosis and study participation was

0.6 years. On-therapy cancer patients were more likely to be older

(P¼ 0.01) and were less likely to be white (P< 0.001) than the

healthy controls. For off-therapy survivors the median age at cancer

diagnosis was 8.4 years, the median interval between diagnosis and

MMQL completion was 7.8 years, and the median age at study

participation was 16.2 years. The off-therapy cancer survivors were

more likely to be older (P¼ 0.01), and less likely to be white

(P< 0.001) compared to the healthy controls.

Summarized in Table III are the mean scores of overall QoL

reported by each group. The mean overall score for on-therapy

patients, off-therapy survivors, and healthy controls, were 3.77,

3.96, and 4.05, respectively. While on-therapy patients scored

significantly lower than healthy controls (P< 0.001), the off-

therapy survivors did not (P¼ 0.1). Mean overall QoL scores for on-

and off-therapy female patients (P< 0.001), patient participants

between the ages of 18 and 20 years (P¼ 0.01), leukemia patients

(P< 0.001), and brain tumor patients (P¼ 0.01) were significantly

lower than healthy controls.

Comparison of Cancer Patients to Healthy Controls

Poor QoL was defined as a score below the 25th percentile in the

gender-specific healthy controls. Compared to healthy controls, on-

therapy cancer patients were at increased risk for poor overall QoL

(OR¼ 3.3, 95%CI 1.3–8.2, P¼ 0.002) and poor physical function-

ing (OR¼ 11.8, 95%CI 4.4–31.4, P< 0.001). In contrast, compar-

isons between off-therapy survivors and healthy controls did not

produce significantly elevated risk estimates for overall QoL

(OR¼ 1.6, P¼ 0.5), or within any of the seven HRQL domains

(Table IV).

On-therapy patients: stratified analyses. Comparisons were

made between on-therapy cancer patients and healthy controls,

stratifying on gender, age at participation, and race. On-therapy

male and female patients reported poorer overall QoL (males:

OR¼ 2.3, P¼ 0.03; females: OR¼ 3.5, P¼ 0.001) and physical

functioning (males: OR¼ 7.8, P< 0.001; females: OR¼ 13.4,

P< 0.001) when compared with male and female healthy controls,

respectively. On-therapy female patients also reported poorer

psychological functioning (OR¼ 2.5, P¼ 0.02), cognitive func-

tioning (OR¼ 2.8, P¼ 0.007), and poorer outlook on life

(OR¼ 4.2, P< 0.001) when compared with female healthy

controls. On-therapy cancer patients reported poorer overall QoL

as well as poorer physical functioning across all age categories,

when compared with healthy controls. Furthermore, older on-

therapy cancer patients (18–20 years) reported poorer outlook on

life (OR¼ 6.5, P< 0.001) when compared with healthy controls in

the same age group, while white cancer patients reported poorer


TABLE II. Characteristics of the Study Participants

Variables Off-therapy survivors (n¼ 226) Patients on therapy (n¼ 136) Healthy controls (n¼ 134)

Age at diagnosis

Median (range) 8.4 (0.0–19.0) 15.4 (5.3–20.0) —

Time since diagnosis

Median (range) 7.8 (1.3–19.8) 0.6 (0.2–9.7) —

Age at study participation

Median (range) 16.2 (13.0–20.0) 16.4 (13.0–20.8) 15.5 (13.1–20.6)

Gender

Male 119 (53%) 82 (60%) 60 (45%)

Female 107 (47%) 54 (40%) 74 (55%)

Ethnicity

White 145 (64%) 98 (72%) 120 (90%)

Hispanic 36 (16%) 14 (7%) 2 (1.5%)

Asian 10 (4%) 6 (4%) 0 (0%)

Black 15 (7%) 8 (6%) 7 (5%)

Native American 1 (<1%) 1 (<1%) 0 (0%)

Other 19 (8%) 8 (6%) 2 (1.5%)

Unknown 0 (0%) 1 (<1%) 2 (1.5%)

Primary diagnosis

Leukemiaa 100 (44%) 62 (46%) —

Lymphomab 42 (19%) 36 (26%) —

Brain tumors 10 (4%) 7 (5%) —

Other solid tumors 74 (33%) 31 (23%) —

aLeukemia includes patients with acute lymphoblastic leukemia and acute myeloid leukemia; bLymphoma includes patients with Hodgkin disease

and non-Hodgkin lymphoma.

680 Wu et al.

overall QoL (OR¼ 2.5,P¼ 0.002), physical functioning (OR¼ 7.9,

P< 0.001), and poorer outlook on life (OR¼ 2.3, P¼ 0.004) when

compared with white healthy controls (Table IV).

Off-therapy cancer survivors: stratified analyses. Similar

comparisons for off-therapy cancer survivors revealed that female

off-therapy survivors were at risk for poorer physical functioning

(OR¼ 2.8, P¼ 0.003) when compared with gender-matched

healthy controls. Female, but not male, off-therapy cancer survivors

were at risk for poorer cognitive functioning (OR¼ 2.1, P¼ 0.02),

social functioning (OR¼ 2.1, P¼ 0.02) and intimate relations

(OR¼ 2.0, P¼ 0.03) when compared with healthy controls of the

same gender. Stratification by age revealed that older cancer

survivors were at risk for reporting poorer physical functioning

when compared with age-matched healthy controls (15–17 years:

OR¼ 3.9, P¼ 0.001; 18–20 years: OR¼ 3.0, P¼ 0.02). Further-

more, off-therapy cancer survivors between the ages of 18 and

20 years were at risk for reporting poorer cognitive functioning

(OR¼ 3.2, P¼ 0.02) and social functioning (OR¼ 3.4, P¼ 0.02),

when compared with age-matched healthy controls (Table IV).

Predictors of Risk for Poor HRQL AmongCancer Patients

On-therapy patients. Female patients on therapy were at a

significantly higher risk of reporting poor overall QoL (OR¼ 2.6,

P¼ 0.02), when compared with male patients on therapy. On the

other hand, primary diagnosis of lymphoma (OR¼ 0.3, P¼ 0.01)

and solid tumors (OR¼ 0.4, P¼ 0.04) was associated with a

significantly reduced risk of reporting poor overall QoL, when

compared with leukemia. Female gender (referent group male

patients on therapy) was a significant risk factor for poorer physical

functioning (OR¼ 3.7, P¼ 0.004), psychological functioning

(OR¼ 3.5, P¼ 0.005), cognitive functioning (OR¼ 2.1,

P¼ 0.06), body image (OR¼ 2.1, P¼ 0.05), and outlook on life

(OR¼ 2.5, P¼ 0.02). Older age at study participation was

associated with significantly elevated risk estimates for poorer

outlook on life (18–20 years: OR¼ 3.5, P¼ 0.02), when compared

patients on therapy between the ages of 13 and 14 years (Table V).

Off-therapy patients. Risk of poor overall QoL was signifi-

cantly associated with female gender (OR¼ 2.3,P¼ 0.01—referent

group male patients off therapy for cancer). Time since diagnosis

>7 years (OR¼ 0.5, P¼ 0.05) when compared with time since

diagnosis�7 years, and primary diagnosis of lymphoma (OR¼ 0.3,

P¼ 0.04) and solid tumors (OR¼ 0.4, P¼ 0.03) when compared

with a diagnosis of leukemia, were associated with reduced risk of

reporting poor overall QoL. Within the HRQL domains, female

gender was significantly associated with poorer physical function-

ing (OR¼ 3.9,P< 0.001—referent group, male patients off therapy

for cancer), psychological functioning (OR¼ 2.2, P¼ 0.003), and

body image (OR¼ 2.1, P¼ 0.01). Older age at study participation

was associated with an increased risk for poorer HRQL in several

domains including physical functioning (OR¼ 3.4, P¼ 0.04),

psychological functioning, (OR¼ 2.5, P¼ 0.02), and social func-

tioning (OR¼ 2.1, P¼ 0.04), as seen in on-therapy patients. Non-

white race was significantly associated with an increased risk for

poor physical function (OR¼ 2.2, P¼ 0.04) and body image

(OR¼ 2.1, P¼ 0.03) (Table V).

DISCUSSION

Increasing attention is being directed toward HRQL among

pediatric cancer patients. This is likely the result of the marked

improvement in survival in this group of cancer patients, with

shifting attention to issues of survivorship and QoL. This study has

demonstrated that the MMQL Adolescent Form discriminates

between different populations in expected ways, indicating that this

instrument can be used to measure HRQL in this population.

Although this study indicates that the long-term impact of cancer

and its treatment on adolescent HRQL is modest, HRQL should be

used in estimating therapeutic efficacy and cost effectiveness in

adolescents with cancer.


TABLE III. Mean (Standard Deviation) Overall Quality of Life Scores of Adolescent CancerPatients On-Therapy, Off-Therapy Cancer Survivors, and Healthy Controls

Characteristic

Overall Quality of Life

Cancer patients on therapy Cancer survivor Healthy control P-value

All subjects 3.77 (0.53) 3.96 (0.56) 4.05 (0.40) <0.001

Sex

Female 3.62 (0.49) 3.82 (0.60) 4.01 (0.39) <0.001

Male 3.88 (0.53) 4.08 (0.49) 4.09 (0.42) 0.009

Diagnosis

Leukemia 3.73 (0.49) 3.90 (0.58) 4.05 (0.40) <0.001

Lymphoma 3.91 (0.52) 4.03 (0.51) 4.05 (0.40) 0.3

Brain tumors 3.73 (0.28) 3.73 (0.46) 4.05 (0.40) 0.01

Solid tumors 3.72 (0.63) 4.02 (0.56) 4.05 (0.40) 0.004

Age at study

13–14 years 3.87 (0.41) 4.04 (0.57) 4.04 (0.41) 0.3

15–17 years 3.79 (0.54) 4.01 (0.55) 4.07 (0.36) 0.003

18–20 years 3.65 (0.59) 3.79 (0.53) 4.04 (0.39) 0.01

Race

White 3.79 (0.52) 4.00 (0.56) 4.05 (0.41) <0.001

Non-white 3.72 (0.55) 3.87 (0.55) 3.96 (0.39) 0.3

Comparison of means between the various groups was conducted using analysis of variance (ANOVA).



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This study demonstrates that cancer patients on active therapy

were at significantly increased risk for poor overall QoL and

physical functioning when compared with healthy controls. In

contrast, HRQL of off-therapy cancer survivors did not differ

significantly from that of the healthy population overall, or in any of

the seven domains examined. Our study confirms previous reports

that indicate that after completion of therapy, cancer survivors seem

generally to be well adjusted, and that most long-term survivors

function well psychologically and do not have significantly more

emotional problems than controls—thus indicating an enhanced

appreciation of life after the cancer experience, despite adverse

effects on actual health status [5,15,30,31,35,42,43].

In the present study, on-therapy female patients were more likely

to report poor psychological functioning, cognitive functioning, and

poor outlook on life when compared with female healthy controls,

whereas male patients were not at increased risk for reporting poor

HRQL in these domains. Furthermore, off-therapy female survivors

were more likely to report poor physical functioning, cognitive

functioning, and intimate relations, when compared with female

healthy controls, whereas male off-therapy survivors reported only

poor physical functioning when compared with male healthy

controls. Several investigators have reported the gender differences

in HRQL among childhood cancer survivors [37], with an increased

tendency among female survivors of ALL to experience anxiety in

stressful situations [30] and mood disturbances [25]. A recent study

found female gender and socioeconomic variables predicted for

depression and somatic distress in lymphoma survivors [37]. Barr

et al. [44] examined the health status and HRQL of adolescent

survivors of childhood cancer (defining adolescence as ages 15–

19 years) and observed that the overall burden of morbidity is

greater in females than males, notably with respect to emotion,

cognition, and pain. Women in the general population are more

likely to be identified with depression than men [45–47]. The

emerging gender difference in depressed mood and depressive

disorders reportedly appears after the age of 13 years or mid-

puberty. Ruminative response style has been supported to be a

possible explanation. Lastly, girls identify more strongly with a

feminine stereotype of needing to appear thin and consequently

become more dissatisfied with their body shape and physical

appearance, which in turn is associated with increased depression

[45,48]. The reasons behind the observed gender differences in the

current study could be a reflection of gender-based differences in

perception of HRQL, or they could be a function of the sensitivity of

the measures with a bias in the direction of females. Nonetheless,

female cancer patients both on- and off-therapy are a vulnerable sub-

group and future research need to focus on the reasons behind the

gender-based differences in HRQL.

Two studies have examined HRQL in multiethnic samples of

adults, with conflicting results [49,50]. Examination of HRQL

concerns among the cancer survivors in the current study

demonstrated that non-whites were more likely to report poorer

physical and psychological functioning and poorer body image. All

non-whites were grouped together in this analysis, due to small

numbers in each ethnic/racial category other than the whites, thus

making it difficult to identify specific vulnerable populations. The

results indicate the need for future QoL studies focusing on ethnic

and racial sub-groups.

There are several limitations with this study, which need to be

considered when interpreting the results. Our investigation is based

upon a convenience sample of patients, and although an attempt was

made to enroll all eligible subjects at each participating institution,

the clinical characteristics of the potentially eligible subjects who

were not recruited in this study are not available. Brain tumor

survivors that have been described previously to report poor HRQL

[51] are underrepresented in this study population. Another

limitation was the absence of detailed information regarding

therapeutic exposures, which could not be assessed as potential

risk factors for poor HRQL. Due to limitations in sample size, ALL

and acute myeloid leukemia were analyzed together as ‘‘leukemia.’’

Similarly, small sample size did not allow us to examine the HRQL

of patients with Hodgkin disease and non-Hodgkin lymphoma

separately. Details regarding medical and functional late effects

were not available, and could not be assessed for their impact on the

reported HRQL in this population. Healthy control study partici-

pants were underrepresented in racial and ethnic minority groups.

Lastly, the study design was cross-sectional, which does not permit

assessment of potential changes in HRQL with time from diagnosis.

However, the major strengths of this study are the use of a

validated, comprehensive, multidimensional self-report instrument

developed to assess HRQL in a diverse cohort of adolescents with

cancer. HRQL in adolescent cancer patients is a largely under-

studied field. Few investigations have focused exclusively on

adolescents; instead many have incorporated them into a larger

study either with adults [12,18,35,37,52] or with children [9,52,53].

Furthermore, because most of the earlier works on adolescent

HRQL collected data through interviews [26], had small sample

sizes (less than 50 patients) [6,9,26,52] or lacked appropriate

controls [26], conclusions drawn from those investigations are

difficult to interpret.

Thus, in this study, we have demonstrated that although

adolescent cancer patients undergoing active therapy were sig-

nificantly more likely to report poor physical functioning and

overall QoL, there was no difference in the overall QoL between

adolescent off-therapy survivors of childhood cancer and the

healthy population. Obviously, the off-therapy adolescent survivors

differ from the on-therapy adolescent patients with regard to the age

at which their cancer was diagnosed and treated. This study does

demonstrate that survivors further out from diagnosis are less likely

to report poor overall QoL. Thus, it will be of interest to determine

the QoL of patients diagnosed and treated during adolescence after

they complete therapy and become young adults, to determine if the

risk for poor QoL decreases with time. Among the cancer patients,

certain vulnerable sub-populations were identified. These include

females, older study participants, and non-whites, who reported a

more negative perception of physical, psychological, and social

functioning and body image. Future research efforts need to be

directed at investigating the impact of therapeutic exposures and

long-term sequelae on HRQL and its intermediate factors, such as

coping, adaptation, social relationships, and family variables.

Future research also needs to elaborate on the reason(s) for the

observed differences in HRQL based on gender, race, and ethnicity

in order to develop interventions in order to reduce psychological

morbidity and improve HRQL.

APPENDIX I PARTICIPATING INSTITUTIONS

1. City of Hope National Medical Center, Duarte

2. Children’s Hospital of Oakland

3. Children’s Hospital of Philadelphia (CHOP)

4. Minneapolis Children’s Hospital and Medical Clinics


684 Wu et al.

5. Children’s Hospital and Clinics, St. Paul

6. Memorial Sloan Kettering Cancer Center (MSK), New York

7. Children’s Hospital and Regional Medical Center, Seattle

8. Marshfield Clinic

9. North Shore University Hospital (Cornell University Medical

Center), Manhasset

10. DeVos Children’s Hospital, Grand Rapids

11. University of Illinois, Chicago

12. St. John’s Hospital and Medical Center, Gross Pointe Woods

13. The Cleveland Clinic Foundation

14. St. Vincent Hospital, Green Bay

15. Miami Children’s Hospital

16. University of Mississippi Medical Center Children’s Hospital,

Jackson

17. Hackensack University Medical Center

18. Kalamazoo Center for Medical Studies

19. University of Missouri, Columbia

20. Hurley Medical Center, Flint

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