435
Psychosocial Outcomes and Health-Related Quality of
Life in Adult Childhood Cancer Survivors: A Report
from the Childhood Cancer Survivor Study
Lonnie K. Zeltzer,1 Qian Lu,1 Wendy Leisenring,3 Jennie C.I. Tsao,1 Christopher Recklitis,4
Gregory Armstrong,2 Ann C. Mertens,5 Leslie L. Robison,2 and Kirsten K. Ness2
Department of Pediatrics and Division of Cancer Prevention and Control Research, David Geffen School of Medicine at
University of California at Los Angeles and University of California at Los Angeles’s Jonsson Comprehensive Cancer
Center, Los Angeles, California; 2Department of Epidemiology and Cancer Control, St. Jude Children’s Research
Hospital, Memphis, Tennessee; 3Fred Hutchinson Cancer Research Center, Seattle, Washington; 4Dana-Farber
Cancer Institute, Boston, Massachusetts; and 5Department of Pediatrics, Emory University, Atlanta, Georgia
1
Abstract
Purpose: Psychological outcomes, health-related quality of life (HRQOL), and life satisfaction are compared
between 7,147 adult childhood cancer survivors and 388
siblings from the Childhood Cancer Survivor Study,
examining demographic and diagnosis/treatment outcome predictors.
Methods: Psychological distress, HRQOL, and life
satisfaction were measured by the Brief Symptom
Inventory-18, the Medical Outcomes Survey Short
Form-36, and Cantril Ladder of Life, respectively. A
self-report questionnaire provided demographic/health
information and medical record abstraction provided
cancer/treatment data. Siblings’ and survivors’ scores
were compared using generalized linear mixed models,
and predictor effects of demographic and cancer/treatment variables were analyzed by multivariate logistic
regression.
Results: Although survivors report greater symptoms of
global distress (mean, 49.17; SE, 0.12) than do siblings
(mean, 46.64; SE, 0.51), scores remain below population
norms, indicating that survivors and siblings remain
psychologically healthy. Survivors scored worse than
siblings on overall physical (51.30 F 0.10 versus 54.98 F
0.44; P < 0.001) but not emotional aspects of HRQOL, but
effect sizes were small, other than in vitality. Most
survivors reported present (mean, 7.3; SD, 0.02) and
predicted future (mean, 8.6; SD, 0.02) life satisfaction. Risk
factors for psychological distress and poor HRQOL were
female gender, lower educational attainment, unmarried
status, annual household income <$20,000, unemployment, lack of medical insurance, having a major medical
condition, and treatment with cranial radiation.
Conclusion: Compared with population norms, childhood cancer survivors and siblings report positive
psychological health, good HRQOL, and life satisfaction. The findings identify targeted subgroups of
survivors for intervention. (Cancer Epidemiol Biomarkers Prev 2008;17(2):435 – 46)
Introduction
Adulthood is now attainable for most children treated for
cancer with 5-year survival rates at 80% (1). Increased
survival may be accompanied by long-term burden for
some individuals related to the unique characteristics of
their cancer diagnoses and treatment and the effect of
treatment on their educational, psychological, and social
development. Identification of subgroups of childhood
cancer survivors at risk for poor health-related quality of
Received 9/8/07; revised 11/1/07; accepted 11/30/07.
Grant support: National Cancer Institute grant U24-CA55727 (L.L. Robison, Principal
Investigator), American Lebanese Syrian Associated Charities (St. Jude Children’s
Research Hospital), Children’s Cancer Research Fund (University of Minnesota),
University of California at Los Angeles’s Jonsson Comprehensive Cancer Center
postdoctoral fellowship (Q. Lu), and Lance Armstrong Foundation grant
G-00-12-076-02 (L. Zeltzer, Principal Investigator).
The costs of publication of this article were defrayed in part by the payment of page
charges. This article must therefore be hereby marked advertisement in accordance
with 18 U.S.C. Section 1734 solely to indicate this fact.
Requests for reprints: Lonnie K. Zeltzer, Department of Pediatrics, David Geffen
School of Medicine at University of California at Los Angeles, 22-464 MDCC, 10833 Le
Conte Avenue, Los Angles, CA 90095-1752. Phone: 310-825-0731; Fax: 310-794-2104.
E-mail: lzeltzer@mednet.ucla.edu
Copyright D 2008 American Association for Cancer Research.
doi:10.1158/1055-9965.EPI-07-2541
life (HRQOL) is important for development of intervention strategies. As treatments evolve, determination of
treatments promoting long-term survival and reduced
risk for poor HRQOL outcomes will be a goal.
Findings in survivors are often derived from singleinstitution oncology programs or long-term follow-up
clinics and suggest that psychosocial status and HRQOL
are relatively good for most survivors, yet less favorable
outcomes have been reported (2-6). Childhood Cancer
Survivor Study (CCSS) reports have examined psychosocial outcomes and HRQOL within specific diagnostic
groups (7-11). However, it is necessary to examine the
entire cohort of childhood cancer survivors, compare
them with siblings, and identify demographic and
treatment risk factors so that risk-based treatments to
enhance HRQOL of life can be developed.
This report describes psychosocial status, HRQOL,
and life satisfaction in the CCSS cohort, compares
findings to sibling controls and population norms, and
examines broad demographic and treatment factors
associated with poor outcomes among survivors. We
have used siblings as the major comparison group for
survivors because the demographic match to the
survivors is closer in the sibling group than in cohorts
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
436
Psychological Distress, HRQOL, and Life Satisfaction
from which the population norms were derived (12). This
article, by painting the big picture, will provide the
background for future, more detailed, within-diagnosis
analyses.
Materials and Methods
Participants. The CCSS cohort, a resource funded by
the National Cancer Institute, represents the largest and
most comprehensively characterized group of childhood
cancer survivors in North America. Details of study
design and cohort characteristics have been described
elsewhere (13, 14). Subjects were recruited from persons
treated for an initial diagnosis of leukemia, central
nervous system (CNS) malignancy, Hodgkin’s disease,
non – Hodgkin’s lymphoma (NHL), kidney cancer, neuroblastoma, soft tissue sarcoma, or malignant bone
tumor at 1 of 26 institutions across the United States
and Canada, survivors >5 years, and diagnosed between
1970 and 1986 when younger than 21 years of age.
Among the 20,267 eligible individuals, 17,273 were
located; 14,024 (81.2%) survivors and 3,846 siblings were
enrolled. Comparison of participants, nonparticipants,
and those who were lost to follow-up showed similar
demographic, disease, and treatment characteristics
(14, 15). Of eligible survivors and siblings 18 years of
age or older at contact and available for the second
follow-up survey, 9,307 (84%) survivors and 2,875 (80%)
siblings participated. The psychosocial portion of this
survey was sent to all survivors and a randomly
selected subsample of 500 siblings, with 7,147 (77%)
survivors and 388 (78%) siblings participating. The
study was approved by Institutional Review Boards of
all participating institutions with participants providing
informed consent.
Outcome Variables. Emotional health was evaluated
by the 18-item Brief Symptom Inventory-18 (BSI-18),
which includes symptoms over the previous 7 days. The
BSI-18 has been validated in healthy volunteers (16), in
cancer patients (17), and in an earlier administration with
this cohort of cancer survivors (18). The BSI-18 has a
summary scale (the global distress index) and three
subscales (depression, anxiety, and somatization). Raw
scores were converted to T-scores based on U.S.
population norms and dichotomized using a cutpoint
of 63. Those with T-scores z63 were classified as having
poor emotional health (17, 18).
The Medical Outcomes Short Form-36 (SF-36) was
used to evaluate HRQOL. Participants answered 36
questions about general health, well-being, and quality
of life over the previous 4 weeks. The SF-36 has two
summary scales and eight individual subscales representing different aspects of well-being (19). Data are
presented as T-scores, with a general population mean of
50 and SD of 10. Higher scores indicate ‘‘better’’ HRQOL
(19). T-scores were dichotomized for the multiple
variable models. Participants with T-scores at least 1
SD below the population mean (V40) were classified as
reporting poor HRQOL.
Life satisfaction was determined by having participants complete the Cantril Ladder of Life (LOL). The
LOL assesses respondents’ life satisfaction with three
self-report items that indicate life satisfaction in the past,
present, and future. Ratings are made on a 10-point scale
ranging from ‘‘best possible life’’ to ‘‘worst possible life’’
(20), providing a global rating of life satisfaction that has
been used in both population studies and clinical
survivor samples (21-23).
Risk Factors. For these analyses, we considered
sex, age at diagnosis and interview, length of followup, race/ethnicity, marital status, educational attainment, annual household income, and health insurance as
independent variables in our multiple variable models.
Major medical condition was included as a covariate in
the models and was derived from information provided
by participants about medical late effects. Participants
who reported complete deafness, kidney dialysis, congestive heart failure, myocardial infarction, angioplasty,
bypass surgery, stroke, liver cirrhosis, a heart, lung, or
kidney transplant, amputation, joint replacement or
second cancer, and/or current use of seizure medications, medications for heart problems or high blood
pressure, chemotherapy, immune suppressants, or oxygen were classified as having a major medical condition
(24). Diagnosis, treatment, and related information were
obtained from medical records.
Data Analysis. Descriptive statistics were calculated
for demographic and treatment variables and compared
between survivors and siblings with generalized estimating equations (25). To account for sibling-survivor
pairs, mixed models were also used to calculate and
compare age- and gender-adjusted mean scores between
siblings and survivors overall and, by diagnosis, on
subscales and summary scales for the BSI, the SF-36, and
the LOL (26). Mean scores on the BSI-18 and SF-36
were compared among study participants and ageand gender-specific population norms with one-sample
t tests. Frequencies and percents of dichotomized outcomes for the psychosocial, HRQOL, and life satisfaction
scales were calculated and compared among survivors
using both demographic and treatment characteristics as
predictors in multiple variable logistic regression models. Statistical Analysis System version 9.1 was used for
analysis. Bonferroni corrections (n = 17) were used to
reduce errors related to multiple tests, with a levels set
at 0.003.
Results
Characteristics of the Study Population. Participants
were more likely than nonparticipants to be female, older
than 24 years of age, white, college educated, married,
and employed than were nonparticipants (data not
shown). Survivor participants did not differ from nonparticipants by cancer diagnosis, survival time, or
baseline BSI scores. As expected, based on their random
selection for participation in the psychosocial portion of
the questionnaire, sibling participants did not differ from
nonparticipants by sex, age, race, educational attainment,
employment, marital status, or scores on the BSI at
baseline.
Demographic characteristics of participating survivors
and siblings are shown in Table 1. Survivors had a
median age of 32 (18-54) years and siblings had a median
age of 33 (18-58) years. Among survivors, median age at
diagnosis was 7 (0-20) years and median survival time
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
Cancer Epidemiology, Biomarkers & Prevention
Table 1. Characteristics of the study population
Gender
Male
Female
Age at second
follow-up (y)
18-24
25-34
35+
Race/ethnicity
White
Black
Hispanic
Other
Unknown
Educational attainment
<High school
High school graduate
College graduate
Unanswered
Marital status
Single
Married/living as married
Divorced/separated
Unanswered
Employment
Employed or caring
for home
Student
Looking for work/
unable to work
Unanswered
Annual household income
$20,000+
<$20,000
Health insurance
Yes
No
Major medical condition
Yes
No
Diagnosis
Acute lymphoblastic
leukemia
Acute myeloid leukemia
Other or unspecified
leukemia
Astrocytomas
Medulloblastoma, PNET
Other CNS tumors
Hodgkin’s disease
NHL
Wilm’s tumor
Neuroblastoma
Soft tissue sarcoma
Ewing’s sarcoma
Osteosarcoma
Other bone
Age at diagnosis (y)
0-3
4-9
10-14
15-20
Survival time (y)
<20
20-24
25-29
30+
Surgery
Yes
No
Survivors,
n (%)
Siblings,
n (%)
3,481 (48.7)
3,666 (51.3)
186 (47.9)
202 (52.1)
Table 1. Characteristics of the study population (Cont’d)
P*
0.77
0.001
1,482 (20.7)
3,169 (44.3)
2,496 (34.9)
61 (15.7)
157 (40.5)
170 (43.8)
6,500
179
261
182
25
(90.9)
(2.5)
(3.7)
(2.5)
(0.3)
347
9
9
5
18
(89.4)
(2.3)
(2.3)
(1.3)
(4.6)
278
3,549
3,254
66
(3.9)
(49.7)
(45.5)
(0.9)
9
183
194
2
(2.3)
(47.2)
(50.0)
(0.5)
3,136
3,432
506
73
(43.9)
(48.0)
(7.1)
(1.0)
111
226
47
4
(28.6)
(58.2)
(12.1)
(1.0)
<0.001
Survivors,
n (%)
Medical record unavailable
Chemotherapy
Yes
No
Medical record unavailable
Radiation
Cranial
Other than cranial
None
Medical record unavailable
Siblings,
n (%)
P*
410 (5.7)
5,326 (74.5)
1,411 (19.7)
410 (5.7)
2,057
2,415
2,265
410
(28.8)
(33.8)
(31.7)
(5.7)
Abbreviation: PNET, primitive neuroectodermal tumor.
*From generalized estimating equations to allow for intrafamily
correlations.
0.16
5,822 (81.5)
<0.001
was 23
siblings
and not
medical
<0.001
Survivors (and by Diagnostic Subgroup) versus
Siblings. Age- and gender-adjusted means and SEs from
generalized linear mixed models on each of the BSI,
SF-36, and LOL scales are shown in Table 2A to C.
356 (91.8)
372 (5.2)
803 (11.2)
15 (3.9)
15 (3.9)
150 (2.1)
2 (0.5)
6,367 (89.1)
780 (10.9)
363 (93.6)
25 (6.4)
6,362 (89.0)
785 (11.0)
360 (92.8)
28 (7.2)
1,251 (17.5)
5,896 (82.5)
18 (4.6)
370 (95.4)
0.01
<0.02
<0.001
2,090 (29.2)
170 (2.4)
146 (2.0)
548
195
143
955
533
671
448
631
194
395
28
(7.7)
(2.7)
(2.0)
(13.4)
(7.5)
(9.4)
(6.3)
(8.8)
(2.7)
(5.5)
(0.4)
2,211
2,137
1,497
1,302
(30.9)
(29.9)
(20.9)
(18.2)
1,985
2,432
1,829
801
(27.8)
(34.0)
(25.6)
(11.2)
5,403 (75.6)
1,334 (18.7)
(15-34) years. Cases were more likely than
to be younger, white, single, not employed,
insured; have lower income; and have a major
condition.
Emotional Health (BSI-18). Compared with siblings,
survivors reported more symptoms of global distress,
depression, anxiety, and somatization, although scores
are lower (better) than population norms for both
groups. Survivors of acute lymphoblastic leukemia,
astrocytomas, CNS tumors other than medulloblastoma,
Hodgkin’s disease, NHL, Wilm’s tumor, soft tissue
sarcoma, Ewing’s sarcoma, and osteosarcoma reported
higher levels of global distress. Survivors of astrocytoma,
NHL, Ewing’s sarcoma, and osteosarcoma reported
significantly higher depressive symptoms, anxiety, and
somatization. Generally, survivors and siblings had
fewer symptoms than the general population, with
survivors of astrocytoma reporting more depression
and survivors of Hodgkin’s disease reporting more
somatization than population norms.
HRQOL (SF-36). Whereas survivors and siblings
scored higher than norms in mental health, survivors
scored lower than population norms on all other aspects
of HRQOL, except for pain and the mental component
summary, and lower than siblings on the physical
component summary of the SF-36; however, sibling and
survivor means did not differ significantly on the mental
component summary, a pattern persisting for survivors
across diagnostic groups, except for survivors of other or
unspecified leukemia and bone cancer other than Ewing’s
sarcoma or osteosarcoma. General health subscale means
were also lower for survivors than siblings. Survivors of
CNS tumors, lymphoma, soft tissue, or bone malignancies
reported more problems in physical function, role
physical, general health, and social function domains
than did siblings. Bone cancer survivors also reported
significant bodily pain. In addition, survivors of osteosarcoma had lower mean scores than siblings on the role
emotional and mental health subscales. Survivors
of astrocytoma also scored lower on the mental
health subscale, and survivors of NHL scored lower on
the vitality subscale when compared with siblings.
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
437
438
Psychological Distress, HRQOL, and Life Satisfaction
Table 2. Means and SEs on BSI, SF-36, and LOL for survivors and siblings, overall and by diagnosis
A. Means and SEs on the BSI for survivors and siblings, overall and by diagnosis
U.S. population
Siblings
Survivors
Leukemia
Acute
lymphoblastic
leukemia
Acute myeloid
leukemia
Other or
unspecified
leukemia
CNS malignancies
Astrocytomas
Medulloblastoma,
PNET
Other CNS
tumors
Hodgkin’s
disease
NHL
Wilm’s tumor
Neuroblastoma
Soft tissue
sarcoma
Bone tumors
Ewing’s sarcoma
Osteosarcoma
Other bone
Depression
Anxiety
Somatization
Global status index
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
50.00 (49.44-50.56)
47.46* (46.50-48.42)
49.33c (49.11-49.55)
50.00 (49.44-50.56)
46.36* (45.46-47.26)
47.87*,c (47.65-48.09)
50.00 (49.44-50.56)
47.80* (46.92-48.68)
49.03* (50.19-50.59)
50.00 (49.44-50.56)
46.64* (45.64-47.64)
49.17c (48.93-49.41)
47.62* (47.23-48.01)
50.12 (49.73-50.51)
48.84*,c (48.39-49.29)
49.05 (47.60-50.50)
47.73* (46.36-49.10)
50.52 (49.19-51.85)
48.97 (47.44-50.50)
49.33* (47.76-50.90)
47.80 (46.31-49.29)
49.23 (47.80-50.66)
49.00 (47.35-50.65)
51.61*,c (50.81-52.41)
50.53* (49.18-51.88)
47.88*,c (47.12-48.64)
45.77* (44.48-47.06)
50.79c (50.06-51.52)
50.48c (49.25-51.71)
50.31c (49.47-51.15)
48.77 (47.36-50.18)
50.91* (49.34-52.48)
47.67* (46.18-49.16)
50.30c (48.87-51.73)
49.87c (48.22-51.52)
49.08* (48.43-49.73)
48.49*,c (47.86-49.12)
51.43*,c (50.84-52.02)
49.86c (49.17-50.55)
49.49* (48.67-50.31)
48.15* (47.41-48.89)
48.45 (47.55-49.35)
49.18 (48.44-49.92)
48.02*,c (47.24-48.80)
47.84* (47.13-48.55)
47.21* (46.35-48.07)
48.13*,c (47.42-48.84)
50.39c
49.78
50.06
50.48c
(49.65-51.13)
(49.09-50.47)
(49.22-50.90)
(49.79-51.17)
49.18c (48.32-50.04)
48.43*,c (47.65-49.21)
48.34 (47.38-49.30)
49.26c (48.48-50.04)
49.88* (48.53-51.23)
50.22* (49.26-51.18)
47.07 (43.52-50.62)
48.10*,c (46.81-49.39)
48.93* (48.01-49.85)
47.97* (44.58-51.36)
49.52c (48.29-50.75)
50.74c (49.86-51.62)
49.37 (46.12-52.62)
49.31c (47.90-50.72)
49.85c (48.83-50.87)
47.85 (44.13-51.57)
(48.62-49.44)
B. Means and SEs on the SF-36 for survivors and siblings, overall and by diagnosis
U.S. population
Siblings
Survivors
Leukemia
Acute
lymphoblastic
leukemia
Acute myeloid
leukemia
Other or
unspecified
leukemia
CNS malignancies
Astrocytomas
Medulloblastoma,
PNET
Other CNS
tumors
Hodgkin’s
disease
NHL
Wilm’s tumor
Neuroblastoma
Soft tissue
sarcoma
Bone tumors
Ewing’s
sarcoma
Osteosarcoma
Other bone
Physical function
Role physical
Bodily pain
General health
Vitality
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
53.26 (52.75-53.76)
52.50 (51.93-53.08)
54.98* (54.12-55.84)
52.27 (50.98-53.56)
,c
51.30* (51.10-51.50) 49.87*,c (49.58-50.16)
52.38* (52.01-52.75)
50.96* (50.39-51.53)
51.95 (50.68-53.22) 49.30*,c (47.36-51.24)
51.67 (51.03-52.32)
50.99 (50.32-51.66)
52.76 (51.78-53.74)
53.02* (51.94-54.10)
51.62 (51.38-51.86) 49.16*,c (48.91-49.41)
49.32 (48.63-50.01)
45.43* (44.23-46.63)
44.43* (44.16-44.70)
50.05c (49.58-50.52)
45.02* (44.49-45.55)
51.47 (50.00-52.94) 48.74*,c (47.11-50.37)
46.10* (44.30-47.90)
51.87 (51.44-52.30)
49.61c
(47.87-51.35)
44.89* (42.95-46.83)
49.35*,c (48.64-50.06) 48.14*,c (47.06-49.22)
48.16*,c (46.96-49.36) 46.76*,c (44.96-48.56)
51.69 (50.87-52.51) 49.26*,c (48.36-50.16)
52.21 (50.84-53.58) 48.62*,c (47.11-50.13)
43.53* (42.53-44.53)
45.98* (44.29-47.67)
49.23*,c (47.84-50.62) 46.61*,c (44.51-48.71)
51.21 (49.60-52.82) 48.14*,c (46.38-49.90)
44.60* (42.64-46.56)
52.61 (51.24-53.98)
,c
51.94*
,c
51.57 (49.49-53.65)
,c
(51.37-52.51) 49.13*
(48.25-50.01)
52.30 (50.71-53.89)
,c
52.05 (51.38-52.72) 46.73*
,c
(46.00-47.46)
43.96* (43.14-44.78)
,c
51.99* (51.26-52.72) 49.70* (48.60-50.80)
51.98 (51.14-52.82) 49.12* (48.20-50.04) 43.29*,c (42.27-44.31)
45.14* (44.20-46.08)
53.01 (52.34-53.68)
51.61 (50.61-52.61)
52.20 (51.44-52.96) 49.78c (48.94-50.62)
52.50 (51.70-53.30)
51.16 (49.94-52.38)
51.92 (51.00-52.84)
49.85* (48.83-50.87)
45.00* (43.86-46.14)
,c
,c
,c
,c
43.63* (42.69-44.57)
51.60* (50.93-52.27) 49.53* (48.53-50.53) 51.05* (50.29-51.81) 48.94* (48.10-49.78)
49.24*,c (48.04-50.44) 48.63*,c (46.81-50.45) 49.92*,c (48.53-51.31) 49.26*,c (47.73-50.79)
,c
,c
,c
,c
43.64* (42.78-44.50) 47.49* (46.20-48.78) 48.72* (47.74-49.70) 49.22* (48.14-50.30)
52.60 (49.44-55.76)
52.19 (47.43-56.95)
52.54 (48.91-56.17)
52.01 (48.01-56.01)
(Continued on the following page)
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
43.37* (41.68-45.06)
43.52* (42.30-44.74)
45.15 (40.70-49.60)
Cancer Epidemiology, Biomarkers & Prevention
Table 2. Means and SEs on BSI, SF-36, and LOL for survivors and siblings, overall and by diagnosis (Cont’d)
B. Means and SEs on the SF-36 for survivors and siblings, overall and by diagnosis
Role emotional
Social function
Mental health
Physical component
summary
Mental component
summary
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
50.41 (49.73-51.09)
51.41 (50.41-52.41)
49.42*,c (49.18-49.66)
48.86 (48.13-49.58)
56.11* (55.13-57.09)
55.20c (54.96-55.44)
52.56 (52.56-53.64)
53.27 (52.27-54.27)
50.04*,c (49.80-50.28)
48.79 (48.06-49.51)
50.02 (48.77-51.27)
49.43 (49.14-49.72)
49.71* (49.28-50.14)
55.34* (54.91-55.77)
51.08*,c (50.65-51.51)
49.48 (48.93-50.03)
49.82 (48.31-51.33)
56.22* (54.73-57.71)
49.49*,c (47.98-51.00)
51.02 (49.12-52.92)
49.87 (48.24-51.50)
55.71 (54.10-57.32)
51.59 (49.96-53.22)
48.93 (46.87-50.99)
47.92*,c (47.08-48.76)
47.85*,c (46.44-49.26)
54.18*,c (53.36-55.00)
55.37* (53.98-56.76)
48.94*,c (48.10-49.78)
47.77*,c (46.36-49.18)
48.80 (47.74-49.86)
50.32 (48.54-52.10)
48.50* (46.85-50.15)
54.99* (53.38-56.60)
48.10*,c (46.47-49.73)
49.13 (47.05-51.21)
49.47*,c (48.78-50.16)
49.58* (48.72-50.44)
50.63 (49.85-51.41)
50.00 (49.04-50.96)
49.19* (48.41-49.97)
55.49*
54.66*
55.47*
55.76*
55.21*
49.53*,c
50.53*,c
51.58*,c
50.89*,c
49.84*,c
49.35
48.62
49.58
50.12
49.10
48.04*,c (46.63-49.45)
55.21* (53.82-56.60)
48.21*,c (46.80-49.62)
49.55 (47.77-51.33)
48.51*,c (47.49-49.53)
52.36 (48.64-56.08)
54.12*,c (53.12-55.12)
56.56* (52.89-60.23)
45.72*,c (44.72-46.72)
51.49 (47.79-55.19)
49.75 (48.48-51.02)
51.73 (47.05-56.41)
U.S. population
50.87 (50.21-51.53)
Siblings
48.83 (47.26-50.40)
Survivors
47.22* (46.85-47.59)
Leukemia
Acute
47.66* (46.97-48.35)
lymphoblastic
leukemia
Acute myeloid
48.74* (46.39-51.09)
leukemia
Other or
46.32* (43.77-48.87)
unspecified
leukemia
CNS malignancies
Astrocytomas
46.84* (45.53-48.15)
Medulloblastoma, 46.78* (44.58-48.98)
PNET
Other
45.10* (42.53-47.67)
CNS tumors
Hodgkin’s disease
47.07* (46.01-48.13)
NHL
46.89* (45.56-48.22)
Wilm’s tumor
47.70* (46.48-48.92)
Neuroblastoma
48.63* (47.14-50.12)
Soft tissue
46.95* (45.72-48.18)
sarcoma
Bone tumors
Ewing’s
47.11* (44.90-49.32)
sarcoma
Osteosarcoma
44.86*,c (43.29-46.43)
Other bone
50.46 (44.66-56.26)
(54.82-56.16)
(53.82-55.50)
(54.71-56.23)
(54.82-56.70)
(54.45-55.97)
(48.84-50.22)
(49.67-51.39)
(50.80-52.36)
(49.95-51.83)
(49.06-50.62)
(48.49-50.21)
(47.54-49.70)
(48.60-50.56)
(48.92-51.32)
(48.12-50.08)
C. Means and SEs on the Cantril LOL for survivors and siblings, overall and by diagnosis
U.S. population
Siblings
Survivors
Leukemia
Acute
lymphoblastic
leukemia
Acute myeloid
leukemia
Other or
unspecified
leukemia
CNS malignancies
Astrocytomas
Medulloblastoma,
PNET
Other CNS tumors
Hodgkin’s disease
NHL
Wilm’s tumor
Neuroblastoma
Soft tissue sarcoma
Bone tumors
Ewing’s sarcoma
Osteosarcoma
Other bone
Current
5 y ago
5 y in future
Mean (95% CI)
Mean (95% CI)
Mean (95% CI)
6.90 (6.73-7.07)
7.35* (7.17-7.53)
7.33c (7.29-7.37)
6.10 (6.95-6.25)
6.36 (6.14-6.58)
6.42c (6.38-6.46)
8.30 (8.09-8.51)
8.75c (8.59-8.91)
8.56c (8.52-8.60)
7.39c (7.31-7.47)
6.39c (6.29-6.49)
8.59c (8.51-8.67)
7.29 (7.02-7.56)
6.52 (6.21-6.83)
8.45 (8.21-8.69)
7.25 (6.96-7.54)
6.33 (6.00-6.66)
8.42 (8.17-8.67)
7.03c (6.87-7.19)
7.15 (6.90-7.40)
6.26 (6.08-6.44)
6.36 (6.07-6.65)
8.22* (8.08-8.36)
8.21* (7.97-8.45)
6.98 (6.69-7.27)
7.37c (7.25-7.49)
7.38c (7.22-7.54)
7.42c (7.28-7.56)
7.49c (7.31-7.67)
7.24c (7.10-7.38)
6.27 (5.92-6.62)
6.45c (6.31-6.59)
6.60c (6.42-6.78)
6.52c (6.36-6.68)
6.61c (6.41-6.81)
6.27* (6.11-6.43)
8.19* (7.94-8.44)
8.61c (8.51-8.71)
8.76c (8.62-8.90)
8.65c (8.53-8.77)
8.72c (8.56-8.88)
8.48 (8.36-8.60)
7.29c (7.04-7.54)
7.30c (7.12-7.48)
7.89c (7.24-8.54)
6.58c (6.29-6.87)
6.42c (6.20-6.64)
6.67 (5.91-7.43)
8.43 (8.21-8.65)
8.61 (8.45-8.77)
9.11 (8.52-9.70)
NOTE: Scale 0 to 100: higher scores indicate more depression, anxiety, somatization, and overall emotional difficulties. Scale 0 to 100: lower scores indicate
lower HRQOL. Adjusted for age, sex, and intrafamily correlation. Siblings were the reference group. Scale 0 to 10: lower scores indicate lower self-estimate
of life satisfaction.
*U.S. population reference group P < 0.003 adjusted for age and sex.
cSiblings were the reference group P < 0.003 adjusted for age, sex, and intrafamily correlation.
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
439
440
Psychological Distress, HRQOL, and Life Satisfaction
Table 3. Frequencies and percents of survivors with poor outcomes on BSI and SF-36 by socioeconomic variables
A. Frequencies and percents of survivors with poor outcomes on the BSI (ORs and 95% CIs comparing poor outcomes by
sociodemographic variables)
Depression
n (%)
Gender
Male
373
Female
495
Age at second
follow-up (y)
18-24
200
25-34
361
35+
307
Race/ethnicity
White
775
Black
20
Hispanic
40
Other
33
Educational attainment
<High school
52
High school
494
graduate
College graduate
317
Marital status
Single
488
Married/living
270
as married
Divorced/separated 103
Employment
Employed/caring
581
for home
Student
44
Looking for work/
229
unable to work
Annual household income
$20,000+
672
<$20,000
196
Health insurance
Yes
721
No
147
Major medical
condition
Yes
193
No
675
Anxiety
Somatization
Global status index
OR (95% CI)
n (%)
OR (95% CI)
n (%)
OR (95% CI)
n (%)
OR (95% CI)
(10.7)
(13.5)
Reference
1.3 (1.1-1.5)
220 (6.3)
369 (10.1)
Reference
1.7 (1.4-2.0)
371 (10.7)
609 (16.6)
Reference
1.7 (1.4-1.9)
298 (8.6)
454 (12.4)
Reference
1.5 (1.3-1.8)
(13.5)
(11.4)
(12.3)
Reference
1.0 (0.8-1.2)
1.3 (1.0-1.6)
146 (9.9)
248 (7.8)
195 (7.8)
Reference
0.8 (0.6-1.0)
0.9 (0.6-1.1)
182 (12.3)
427 (13.5)
371 (14.9)
Reference
1.1 (0.9-1.3)
1.2 (0.9-1.5)
173 (11.7)
311 (9.8)
268 (10.7)
Reference
0.9 (0.7-1.1)
1.1 (0.9-1.5)
(11.9)
(11.2)
(15.3)
(15.9)
Reference
0.7 (0.4-1.1)
1.2 (0.8-1.7)
1.1 (0.7-1.7)
524
18
30
17
(8.1)
(10.1)
(11.5)
(8.2)
Reference
1.0 (0.6-1.6)
1.3 (0.9-2.0)
0.8 (0.4-1.4)
874
31
54
21
(13.4)
(17.3)
(20.7)
(10.1)
Reference
1.1 (0.7-1.7)
1.5 (1.1-2.1)
0.6 (0.4-1.1)
665
25
40
22
(10.2)
(14.0)
(15.3)
(10.6)
Reference
1.0 (0.7-1.6)
1.4 (1.0-2.0)
0.8 (0.5-1.4)
(18.7)
(13.9)
1.2 (0.9-1.8)
1.2 (1.0-1.4)
43 (15.5)
331 (9.3)
1.6 (1.1-2.3)
1.2 (1.0-1.4)
63 (22.7)
562 (15.8)
1.6 (1.2-2.3)
1.4 (1.2-1.6)
54 (19.4)
433 (12.2)
1.6 (1.1-2.2)
1.3 (1.1-1.5)
(9.7)
Reference
210 (6.5)
Reference
342 (10.5)
Reference
258 (7.9)
Reference
(15.6)
(7.9)
1.9 (1.6-2.3)
Reference
289 (9.2)
226 (6.6)
1.1 (0.9-1.4)
Reference
414 (13.2)
445 (13.0)
0.8 (0.7-1.0)
Reference
387 (12.3)
268 (7.8)
1.3 (1.1-1.6)
Reference
(20.4)
2.2 (1.7-2.9)
1.6 (1.1-2.1)
107 (21.1)
1.2 (0.9-1.6)
86 (17.0)
1.7 (1.2-2.2)
(10.0)
Reference
394 (6.8)
Reference
648 (11.1)
Reference
478 (8.2)
Reference
(11.8)
(28.5)
1.0 (0.7-1.4)
2.5 (2.0-3.0)
30 (8.1)
157 (19.6)
1.0 (0.6-1.5)
2.5 (2.0-3.1)
36 (9.7)
273 (34.0)
0.9 (0.6-1.3)
3.4 (2.8-4.1)
37 (9.9)
223 (27.8)
1.0 (0.7-1.5)
3.1 (2.5-3.7)
(10.6)
(25.1)
Reference
1.8 (1.5-2.2)
463 (7.3)
126 (16.2)
Reference
1.6 (1.3-2.0)
777 (12.2)
203 (26.0)
Reference
1.7 (1.4-2.1)
575 (9.0)
177 (22.7)
Reference
1.8 (1.5-2.3)
(11.3)
(18.7)
Reference
1.3 (1.0-1.7)
490 (7.7)
99 (12.6)
Reference
1.3 (1.0-1.7)
830 (13.0)
150 (19.1)
Reference
1.3 (1.0-1.4)
618 (9.7)
134 (17.1)
Reference
1.3 (1.1-1.7)
(15.4)
(11.4)
1.2 (1.0-1.4)
Reference
133 (10.6)
456 (7.7)
1.2 (1.0-1.6)
Reference
235 (18.8)
745 (12.6)
1.3 (1.1-1.6)
Reference
170 (13.6)
582 (9.9)
1.2 (1.0-1.4)
Reference
67 (13.2)
B. Frequencies and percents of survivors with poor outcomes on the SF-36 (ORs and 95% CIs comparing poor outcomes by sociodemographic variables)
Physical function
n (%)
Role physical
OR
(95% CI)
n (%)
OR
(95% CI)
Bodily pain
n (%)
OR
(95% CI)
General health
n (%)
OR
(95% CI)
Vitality
n (%)
OR
(95% CI)
Gender
Male
311 (8.9) Reference
586 (16.8) Reference 377 (10.8) Reference 547 (15.7) Reference 1,115 (32.0) Reference
Female
483 (13.2) 1.7 (1.4-2.0) 837 (22.8) 1.5 (1.3-1.7) 573 (15.6) 1.6 (1.3-1.8) 845 (23.0) 1.7 1.5-1.9 1,735 (47.3) 1.9 (1.7-2.1)
Age at second follow-up (y)
18-24
115 (7.8) Reference
223 (15.0) Reference 139 (9.4) Reference
223 (15.0) Reference
546 (36.8) Reference
25-34
292 (9.2) 1.3 (1.0-1.7) 576 (18.2) 1.4 (1.1-1.7) 379 (12.0) 1.4 (1.1-1.7) 575 (18.1) 1.3 (1.1-1.6) 1,264 (39.9) 1.2 (1.0-1.3)
35+
387 (15.5) 2.4 (1.8-2.3) 624 (25.0) 2.2 (1.7-2.7) 432 (17.3) 2.1 (1.7-2.8) 594 (23.8) 1.8 (1.5-2.3) 1,040 (41.7) 1.2 (1.0-1.4)
Race/ethnicity
White
701 (10.8) Reference 1,262 (19.4) Reference 843 (13.0) Reference 1,244 (19.1) Reference 2,594 (39.9) Reference
Black
32 (17.9) 1.1 (0.7-1.8)
52 (29.1) 1.2 (0.8-1.8) 33 (18.4) 1.2 (0.8-1.8)
45 (25.1) 1.0 (0.7-1.5)
73 (40.8) 0.9 (0.6-1.2)
Hispanic
41 (15.7) 1.4 (0.9-2.0)
67 (25.7) 1.3 (1.0-1.8) 47 (18.0) 1.3 (0.9-1.8)
61 (23.4) 1.2 (0.9-1.6) 110 (42.1) 1.0 (0.8-1.3)
Other
20 (9.7) (0.7 0.4-1.2)
42 (20.3) 1.0 (0.6-1.5) 27 (13.0) 1.0 (0.6-1.6)
42 (20.3) 1.0 (0.6-1.4)
73 (35.3) 0.8 (0.6-1.1)
Educational
attainment
<High
73 (26.3) 2.5 (1.7-3.5)
93 (33.5) 1.6 (1.2-2.2) 67 (24.1) 1.9 (1.4-2.7)
90 (32.4) 1.9 (1.4-2.5)
122 (43.9) 1.0 (0.8-1.3)
school
(Continued on the following page)
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
Cancer Epidemiology, Biomarkers & Prevention
Table 3. Frequencies and percents of survivors with poor outcomes on BSI and SF-36 by socioeconomic variables (Cont’d)
B. Frequencies and percents of survivors with poor outcomes on the SF-36 (ORs and 95% CIs comparing poor outcomes by sociodemographic variables)
Physical function
n (%)
High
school
graduate
College
graduate
Marital
status
Single
Married/
living
as married
Divorced/
separated
Employment
Employed/
caring
for home
Student
Looking
for work/
unable
to work
Annual
household
income
$20,000+
<$20,000
Health
insurance
Yes
No
Major
medical
condition
Yes
No
Role physical
n (%)
OR
(95% CI)
OR
(95% CI)
Bodily pain
n (%)
OR
(95% CI)
General health
n (%)
OR
(95% CI)
Vitality
n (%)
OR
(95% CI)
446 (12.6) 1.4 (1.2-1.7) 773 (21.8) 1.3 (1.1-1.4) 542 (15.3) 1.4 (1.2-1.7)
768 (21.6) 1.4 (1.2-1.6) 1,461 (41.2) 1.1 (1.0-1.2)
256 (7.9)
523 (16.1)
Reference
544 (16.7)
Reference 332 (10.2) Reference
Reference 1,238 (38.0)
Reference
358 (11.4) 0.9 (0.7-1.1)
338 (9.8) Reference
632 (20.2) 1.0 (0.9-1.2) 391 (12.5) 0.8 (0.7-1.0)
630 (18.4) Reference 443 (12.9) Reference
584 (18.6) 0.9 (0.8-1.0) 1,227 (39.1) 0.9 (0.8-1.0)
648 (18.9) Reference 1,351 (39.4) Reference
92 (18.2) 1.3 (0.9-1.7)
149 (29.4) 1.2 (1.0-1.6) 108 (21.3) 1.2 (0.9-1.5)
149 (29.4) 1.2 (1.0-1.6)
899 (15.4) Reference 591 (10.2) Reference
940 (16.1) Reference 2,171 (37.3) Reference
67 (18.0) 1.5 (1.1-2.0) 44 (11.8) 1.5 (1.1-2.2)
426 (53.1) 5.1 (4.3-6.1) 293 (36.5) 4.1 (3.4-5.0)
56 (15.1) 1.1 (0.8-1.5)
365 (45.5) 1.3 (1.1-1.4)
410 (7.0)
Reference
43 (11.6) 2.3 (1.6-3.4)
318 (39.6) 6.5 (5.3-7.9)
247 (48.8) 1.2 (1.0-1.4)
136 (36.6) 1.0 (0.8-1.3)
481 (59.9) 2.2 (1.9-2.6)
608 (9.5) Reference 1,152 (18.1) Reference 759 (11.9) Reference 1,127 (17.7) Reference 2,415 (37.9) Reference
186 (23.8) 1.8 (1.5-2.3) 271 (34.7) 1.6 (1.3-2.0) 191 (24.5) 1.6 (1.3-1.9) 265 (34.0) 1.7 (1.4-2.1) 435 (55.8) 1.7 (1.5-2.1)
701 (11.0) Reference 1,250 (19.6) Reference 818 (12.9) Reference 1,221 (19.2) Reference 2,518 (39.6) Reference
93 (11.8) 1.3 (1.0-1.8) 173 (22.0) 1.3 (1.0-1.6) 132 (16.8) 1.0 (0.8-1.2) 171 (21.8) 1.1 (0.9-1.4) 332 (42.3) 1.0 (0.9-1.2)
362 (28.9) 3.9 (3.2-4.6) 410 (32.8) 1.7 (1.5-2.3) 270 (21.6) 1.6 (1.3-1.9) 368 (29.4) 1.5 (1.3-1.8) 594 (47.5) 1.3 (1.1-1.5)
432 (7.3) Reference 1012 (17.2) Reference 680 (11.5) Reference 1023 (17.4) Reference 2,255 (38.2) Reference
Role emotional
n (%)
OR
(95% CI)
Social function
n (%)
Gender
Male
540 (15.5) Reference 439
Female
802 (21.9) 1.5 (1.3-1.7) 634
Age at second
follow-up (y)
18-24
296 (20.0) Reference 228
25-34
570 (18.0) 0.9 (0.8-1.1) 446
35+
476 (19.1) 1.1 (0.9-1.3) 399
Race/
ethnicity
White
1,192 (18.3) Reference 949
Black
37 (20.7) 0.9 (0.6-1.3) 31
Hispanic
60 (23.0) 1.2 (0.9-1.6) 54
Other
53 (25.6) 1.5 (1.0-2.1) 39
Educational attainment
<High
75 (27.0) 1.2 (0.9-1.6) 71
school
High
713 (20.1) 1.1 (0.9-1.2) 623
school
graduate
OR
(95% CI)
Mental health
n (%)
OR
(95% CI)
Physical component
summary
n (%)
OR
(95% CI)
Mental component
summary
n (%)
OR
(95% CI)
(12.6) Reference 266 (7.6) Reference
456 (13.1) Reference
(17.3) 1.5 (1.3-1.7) 381 (10.4) 1.4 (1.2-11.7) 681 (18.6) 1.6 (1.4-1.8)
595 (17.1) Reference
844 (23.0) 1.4 (1.3-1.6)
(15.4) Reference 153 (10.3) Reference
(14.1) 1.0 (0.8-1.2) 277 (8.7) 0.8 (0.7-1.1)
(16.0) 1.3 (1.0-1.6) 217 (8.7) 0.9 (0.7-1.1)
321 (21.7) Reference
636 (20.1) 1.0 (0.8-1.1)
482 (19.3) 1.0 (0.8-1.2)
(14.6) Reference
(17.3) 0.8 (0.5-1.3)
(20.7) 1.4 (1.0-1.9)
(18.8) 1.3 (0.9-1.9)
576 (8.9)
21 (11.7)
29 (11.1)
21 (10.1)
141 (9.5) Reference
442 (13.9) 1.6 (1.3-2.0)
554 (22.2) 2.8 (2.2-3.6)
Reference 1,016 (15.6) Reference 1,278 (19.7) Reference
1.1 (0.6-1.7)
37 (20.7) 1.0 (0.6-1.5)
40 (22.3) 0.9 (0.6-1.4)
1.1 (0.8-1.7)
53 (20.3) 1.2 (0.9-1.8)
64 (24.5) 1.2 (0.9-1.6)
1.1 (0.7-1.8)
31 (15.0) 0.9 (0.6-1.4)
57 (27.5) 1.5 (1.1-2.1)
(25.5) 1.6 (1.1-2.2) 49 (17.6) 1.5 (1.1-2.2)
80 (28.8) 2.0 (1.4-2.7)
76 (27.3) 1.1 (0.8-1.5)
(17.6) 1.4 (1.2-1.6) 355 (10.0) 1.1 (0.9-1.3)
633 (17.8) 1.5 (1.2-1.7)
761 (21.4) 1.0 (0.9-1.2)
(Continued on the following page)
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
441
442
Psychological Distress, HRQOL, and Life Satisfaction
Table 3. Frequencies and percents of survivors with poor outcomes on BSI and SF-36 by socioeconomic variables (Cont’d)
Role emotional
n (%)
College
542 (16.7)
graduate
Marital status
Single
639 (20.4)
Married/
553 (16.1)
living
as married
Divorced/
135 (26.7)
separated
Employment
Employed/
933 (16.0)
caring for
home
Student
81 (21.8)
Looking for
299 (37.2)
work/unable
to work
Annual household income
$20,000+
1,090 (17.1)
<$20,000
252 (32.3)
Health insurance
Yes
1,147 (18.0)
No
195 (24.8)
Major medical condition
Yes
283 (22.6)
No
1,058 (17.9)
OR
(95% CI)
Social function
n (%)
OR
(95% CI)
Mental health
n (%)
OR
(95% CI)
Reference 365 (11.2) Reference 238 (7.3)
Physical component
summary
n (%)
OR
(95% CI)
Mental component
summary
n (%)
OR
(95% CI)
410 (12.6) Reference
589 (18.1) Reference
1.1 (1.0-1.3) 525 (16.7) 1.1 (1.0-1.3) 314 (10.0) 1.1 (0.9-1.3)
Reference 420 (12.2) Reference 250 (7.3) Reference
447 (14.3) 0.7 (0.6-0.9)
559 (16.3) Reference
699 (22.3) 1.2 (1.0-1.4)
582 (17.0) Reference
1.4 (1.1-1.8) 114 (22.5) 1.4 (1.1-1.8) 75 (14.8) 1.5 (1.1-2.0)
124 (24.5) 1.1 (0.8-1.4)
142 (28.1) 1.4 (1.2-1.8)
Reference 668 (11.5) Reference 424 (7.3)
Reference
674 (11.6) Reference 1,027 (17.6) Reference
1.4 (1.0-1.8) 63 (16.9) 1.4 (1.1-2.0) 31 (8.3) 0.9 (0.6-1.4)
2.5 (2.1-3.0) 317 (39.5) 3.7 (3.1-4.5) 181 (22.5) 2.8 (2.2-3.4)
51 (13.7) 2.0 (1.4-2.8)
385 (47.9) 6.3 (5.2-7.6)
76 (20.4) 1.1 (0.8-1.4)
305 (38.0) 2.3 (1.9-2.8)
Reference 835 (13.1) Reference 501 (7.9) Reference
1.7 (1.4-2.0) 238 (30.5) 1.9 (1.6-2.3) 146 (18.7) 1.7 (1.4-2.2)
916 (14.4) Reference 1,169 (18.4) Reference
221 (28.3) 1.6 (1.3-1.9) 270 (34.6) 1.7 (1.4-2.0)
Reference 915 (14.4) Reference 521 (8.2) Reference 1,007 (15.8) Reference 1,223 (19.2) Reference
1.2 (1.0-1.4) 158 (20.1) 1.0 (0.8-1.2) 126 (16.1) 1.5 (1.2-1.9) 130 (16.6) 1.3 (1.0-1.7) 216 (27.5) 1.3 (1.0-1.5)
1.1 (1.0-1.3) 264 (21.1) 1.3 (1.1-1.5) 140 (11.2) 1.2 (0.9-1.4)
Reference 808 (13.7) Reference 507 (8.6) Reference
383 (30.6) 2.2 (1.8-2.5) 284 (22.7) 1.0 (0.9-1.2)
754 (12.8) Reference 1,154 (19.6) Reference
NOTE: Models adjusted for all variables in left column of the table.
Compared with age-relevant U.S. population norms,
survivors had poorer outcomes on physical function, role
physical, general health, vitality, role emotional, and
social function domains as well as physical component
but had better outcomes on the mental health subscale.
This pattern persisted for survivors across diagnostic
groups, except for those with leukemia, Wilm’s tumor,
neuroblastoma, and bone cancer other than Ewing’s
sarcoma or osteosarcoma. Compared with norms, siblings had better outcomes on physical function, general
health, and mental health domains and poorer outcomes
on the vitality domain.
Life Satisfaction (LOL). Overall, survivors and siblings
reported high levels of current and predicted life
satisfaction, except for CNS tumor survivors who
predicted lower levels of satisfaction 5 years into the
future than did siblings. Both survivors and siblings
reported better current and future life satisfaction than
did the general population.
Demographic and Social Factors. Frequencies and
percents of having poor psychosocial or quality of life
among survivors by sociodemographic characteristics are
shown in Table 3A and B with odds ratios (OR) and 95%
confidence intervals (95% CI).
Emotional Health (BSI-18). In adjusted models, female
gender, lower educational attainment, unemployment,
annual household income <$20,000, lack of health
insurance, being African-American, and having a major
medical condition were associated with increased risk for
reporting symptoms of depression, anxiety, somatization, and global distress. Current age over 35 years was
also associated with higher risk of reporting depressive
symptoms. Compared with those who were married/
living as married, unmarried survivors were more likely
to report depressive symptoms and global distress.
Divorced or separated individuals also reported more
symptoms of anxiety when compared with those who
were married/living as married. Hispanics were more
likely than Whites to report symptoms of somatization
and global distress.
HRQOL (SF-36). Female gender, unemployment,
annual household income <$20,000, and lack of health
insurance were associated with poor HRQOL across all
summaries and subscales of the SF-36. Participants with
a major medical condition were more likely than those
without to report poor HRQOL across most domains,
with the exception of mental health subscale and
mental component summary scale. Older age and
lower educational attainment were associated with
increased risk of reporting poor physical HRQOL
(physical component summary, general health, physical
function, role physical, and bodily pain subscales), less
vitality, and poor social function.
Compared with Whites, Hispanics were at increased
risk of reporting poor outcomes on role physical and
social function subscales. Other ethnic minorities (nonBlack and non-Hispanic) were at increased risk of
reporting poor HRQOL in role emotional and mental
health domains. Compared with those who were
married/living as married, unmarried survivors were
at increased risk of reporting poor outcomes on role
emotional, social function, and mental health subscales.
When compared with those who were married/living as
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
Cancer Epidemiology, Biomarkers & Prevention
Table 4. Frequencies and percents of survivors with poor outcomes on BSI and SF-36 by treatment variables
A. Frequencies and percents of survivors with poor outcomes on the BSI (ORs and 95% CIs comparing poor outcomes by
treatment variables)
Depression
Gender
Male
Female
Age at diagnosis (y)
0-3
4-9
10-14
15-20
Survival time (y)
<20
20-24
25-29
30+
Surgery
Yes
No
Chemotherapy
Yes
No
Radiation
Cranial
Other than cranial
None
Anxiety
Somatization
Global status index
n (%)
OR (95% CI)
n (%)
OR (95% CI)
n (%)
OR (95% CI)
n (%)
OR (95% CI)
351 (10.8)
472 (13.6)
Reference
1.3 (1.1-1.5)
206 (6.3)
347 (10.0)
Reference
1.7 (1.4-2.0)
343 (10.5)
575 (16.6)
Reference
1.7 (1.5-2.0)
278 (8.5)
427 (12.3)
Reference
1.53 (1.3-1.8)
261
251
160
151
(12.5)
(12.6)
(11.3)
(12.2)
1.0 (0.8-1.2)
1.0 (0.8-1.2)
0.9 (0.7-1.1)
Reference
184
170
103
96
(8.8)
(8.5)
(7.3)
(7.7)
1.1 (0.8-1.4)
1.1 (0.8-1.5)
0.9 (0.7-1.2)
Reference
248
277
204
189
(11.9)
(13.9)
(14.5)
(15.2)
0.8 (0.6-0.9)
0.9 (0.7-1.1)
1.0 (0.8-1.2)
Reference
222
219
141
123
(10.6)
(11.0)
(10.0)
(9.9)
1.1 (0.8-1.4)
1.1 (0.9-1.4)
1.0 (0.8-1.3)
Reference
243 (12.9)
280 (11.8)
207 (12.1)
93 (12.3)
1.0 (0.8-1.3)
0.9 (0.7-1.2)
1.0 (0.7-1.2)
Reference
171
195
129
58
(9.1)
(8.2)
(7.5)
(7.7)
1.1 (0.8-1.6)
1.0 (0.8-1.4)
1.0 (0.7-1.3)
Reference
249
311
239
119
(13.2)
(13.1)
(13.9)
(15.8)
0.8 (0.7-1.1)
0.8 (0.6-1.0)
0.9 (0.7-1.1)
Reference
207 (11.0)
222 (9.3)
185 (10.8)
91 (12.1)
0.9 (0.7-1.2)
0.7 (0.6-1.0)
0.9 (0.7-1.1)
Reference
652 (12.1)
171 (12.8)
1.1 (0.9-1.4)
Reference
435 (8.1)
118 (8.8)
1.1 (0.8-1.4)
Reference
733 (13.6)
185 (13.9)
1.0 (0.8-1.2)
Reference
566 (10.5)
139 (10.4)
1.2 (0.9-1.5)
Reference
646 (12.1)
177 (12.5)
1.0 (0.8-1.2)
Reference
450 (8.4)
103 (7.3)
1.2 (0.9-1.5)
Reference
736 (13.8)
182 (12.9)
1.1 (0.9-1.4)
Reference
565 (10.6)
140 (9.9)
1.1 (0.9-1.4)
Reference
287 (14.0)
264 (10.9)
272 (12.0)
1.2 (1.0-1.5)
0.9 (0.7-1.1)
Reference
159 (7.7)
189 (7.8)
205 (9.1)
0.9 (0.7-1.1)
0.9 (0.7-1.1)
Reference
275 (13.4)
372 (15.4)
271 (12.0)
1.1 (1.0-1.4)
1.3 (1.1-1.5)
Reference
214 (10.4)
251 (10.4)
240 (10.6)
1.0 (0.8-1.2)
1.0 (0.8-1.2)
Reference
B. Frequencies and percents of survivors with poor outcomes on the SF-36 (ORs and 95% CIs comparing poor outcomes by
treatment variables)
Physical function
n (%)
Gender
Male
292 (8.9)
Female 457 (13.2)
Age at diagnosis (y)
0-3
171 (8.2)
4-9
189 (9.5)
10-14
188 (13.3)
15-20
201 (16.2)
Survival time (y)
<20
164 (8.7)
20-24
247 (10.4)
25-29
223 (13.0)
30+
115 (15.2)
Surgery
Yes
653 (12.1)
No
96 (7.2)
Chemotherapy
Yes
565 (10.6)
No
184 (13.0)
Radiation
Cranial 239 (11.6)
Other
281 (11.6)
than
cranial
None
229 (10.1)
OR
(95% CI)
n (%)
OR
(95% CI)
Bodily pain
n (%)
General health
n (%)
OR
(95% CI)
OR
(95% CI)
Vitality
n (%)
OR
(95% CI)
Reference
1.7 (1.4-2.0)
549 (16.8) Reference 346 (10.6) Reference
791 (22.8) 1.5 (1.3-1.7) 539 (15.5) 1.6 (1.4-1.8)
511 (15.7) Reference 1,031 (31.6) Reference
794 (22.9) 1.6 (1.4-1.9) 1,653 (47.6) 2.0 (1.8-2.2)
0.5 (0.4-0.6)
0.5 (0.4-0.7)
0.8 (0.6-1.0)
Reference
323
374
330
313
(15.5) 0.5 (0.4-0.7) 217 (10.4) 0.5 (0.4-0.7)
(18.7) 0.7 (0.6-0.8) 232 (11.6) 0.6 (0.5-0.8)
(23.4) 0.9 (0.7-1.1) 221 (15.7) 0.9 (0.7-1.0)
(25.2) Reference 215 (17.3) Reference
346
362
292
305
(16.6) 0.6 (0.5-0.8)
(18.1) 0.7 (0.6-0.9)
(20.7) 0.8 (0.7-1.0)
(24.6) Reference
790
785
607
502
(37.8) 0.9 (0.8-1.0)
(39.3) 1.0 (0.8-1.1)
(43.0) 1.1 (1.0-1.3)
(40.5) Reference
0.5 (0.4-0.7)
0.6 (0.5-0.8)
0.8 (0.6-1.0)
Reference
340
456
364
180
(18.0) 0.7 (0.6-0.9) 225 (11.9) 0.7 (0.5-0.9)
(19.1) 0.8 (0.6-0.9) 290 (12.2) 0.7 (0.5-0.9)
(21.2) 0.8 (0.7-1.0) 243 (14.2) 0.8 (0.6-1.0)
(23.8) Reference 127 (16.8) Reference
322
448
338
197
(17.1) 0.6 (0.5-0.8)
(18.8) 0.7 (0.6-0.8)
(19.7) 0.7 (0.6-0.8)
(26.1) Reference
723
937
717
307
(38.3) 0.9 (0.8-1.1)
(39.3) 1.0 (0.8-1.1)
(41.8) 1.0 (0.9-1.3)
(40.7) Reference
1.9 (1.5-2.5) 1,106 (20.5) 1.2 (1.0-1.5) 726 (13.4) 1.2 (1.0-1.4) 1,063 (19.7) 1.1 (0.9-1.3) 2,149 (39.8) 1.1 (1.0-1.3)
Reference
234 (17.5) Reference 159 (11.9) Reference
242 (18.1) Reference
535 (40.1) Reference
1.0 (0.9-1.2) 1,033 (19.4) 1.0 (0.8-1.1) 696 (13.1) 1.1 (0.9-1.4) 1,036 (19.5) 1.1 (1.0-1.6) 2,093 (39.3) 0.9 (0.8-1.1)
Reference
307 (21.8) Reference 189 (13.4) Reference
269 (19.1) Reference
591 (41.9) Reference
1.3 (1.1-1.6)
0.9 (0.7-1.1)
Reference
Role emotional
n (%)
Role physical
OR (95% CI)
Gender
Male
505 (15.5) Reference
Female 763 (22.0) 1.6 (1.4-1.8)
434 (21.1) 1.4 (1.2-1.6) 263 (12.8) 1.1 (0.9-1.3)
523 (21.7) 1.2 (1.0-1.4) 345 (14.3) 1.0 (0.9-1.2)
387 (18.8) 1.3 (1.1-1.6)
572 (23.7) 1.6 (1.3-1.8)
872 (42.4) 1.1 (1.0-1.3)
981 (40.6) 1.1 (0.9-1.2)
383 (16.9)
346 (15.3)
831 (36.7)
Reference
Social function
n (%)
408 (12.5)
600 (17.3)
OR (95% CI)
277 (12.2)
Reference
Mental health
n (%)
Reference
Physical component
summary
Mental component
summary
n (%)
OR (95% CI)
n (%)
OR (95% CI)
422 (12.9)
646 (18.6)
Reference
1.6 (1.4-1.9)
556 (17.0)
802 (23.1)
Reference
1.5 (1.3-1.7)
OR (95% CI)
Reference 244 (7.5) Reference
1.5 (1.3-1.7) 352 (10.1) 1.4 (1.2-1.7)
Reference
(Continued on the following page)
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
443
444
Psychological Distress, HRQOL, and Life Satisfaction
Table 4. Frequencies and percents of survivors with poor outcomes on BSI and SF-36 by treatment variables (Cont’d)
B. Frequencies and percents of survivors with poor outcomes on the SF-36 (ORs and 95% CIs comparing poor outcomes by treatment
variables)
Role emotional
n (%)
Age at diagnosis (y)
0-3
397
4-9
378
10-14
266
15-20
227
Survival time (y)
<20
356
20-24
437
25-29
325
30+
150
Surgery
Yes
1,024
No
244
Chemotherapy
Yes
1,001
No
267
Radiation
Cranial
381
Other
447
than cranial
None
440
OR (95% CI)
Social function
n (%)
Mental health
OR (95% CI) n (%) OR (95% CI)
Physical component
summary
n (%)
OR (95% CI)
Mental component
summary
n (%)
OR (95% CI)
(19.0)
(18.9)
(18.9)
(18.3)
1.0 (0.9-1.3)
1.1 (0.9-1.3)
1.0 (0.9-1.3)
Reference
320
289
213
186
(15.3)
(14.5)
(15.1)
(15.0)
1.0 (0.8-1.3) 201 (9.6) 1.2 (0.9-1.6)
1.0 (0.8-1.2) 182 (9.1) 1.2 (0.9-1.5)
1.0 (0.8-1.2) 118 (8.4) 1.1 (0.8-1.4)
Reference 95 (7.7) Reference
239
272
266
291
(11.4)
(13.6)
(18.9)
(23.5)
0.4 (0.3-0.5)
0.5 (0.4-0.6)
0.7 (0.7-0.9)
Reference
436
415
283
224
(20.9)
(20.8)
(20.1)
(18.1)
1.2 (1.0-1.5)
1.2 (1.0-1.5)
1.2 (1.0-1.4)
Reference
(18.9)
(18.3)
(19.0)
(19.9)
0.9 (0.7-1.2)
0.9 (0.7-1.1)
0.9 (0.8-1.2)
Reference
277
331
272
128
(14.7)
(13.9)
(15.9)
(17.0)
0.9 (0.7-1.1) 173 (9.2) 0.9 (0.7-1.2)
0.8 (0.6-1.0) 192 (8.1) 0.8 (0.6-1.1)
0.9 (0.7-1.2) 159 (9.3) 1.0 (0.7-1.3)
Reference 72 (9.5) Reference
235
356
306
171
(12.5)
(14.9)
(17.9)
(22.6)
0.5 (0.4-0.6)
0.7 (0.6-0.9)
0.7 (0.6-0.9)
Reference
379
478
355
146
(20.1)
(20.1)
(20.7)
(19.3)
1.2 (1.0-1.5)
1.2 (1.0-1.5)
1.2 (1.0-1.4)
Reference
(19.0) 1.2 (1.0-1.4) 821 (15.2) 1.2 (1.0-1.5) 472 (8.7) 1.1 (0.9-1.4) 906 (16.8) 1.5 (1.2-1.8) 1,097 (20.3) 1.2 (1.0-1.4)
(18.3) Reference 187 (14.0) Reference 124 (9.3) Reference 162 (12.1) Reference
261 (19.6) Reference
(18.8) 1.0 (0.9-1.2) 785 (14.7) 1.0 (0.8-1.1) 480 (9.0) 1.1 (0.9-1.4) 821 (15.4) 1.1 (0.9-1.3) 1,071 (20.1) 1.0 (0.9-1.2)
(18.9) Reference 223 (15.8) Reference 116 (8.2)
247 (17.5) Reference
287 (20.3) Reference
(18.5) 1.0 (0.8-1.1) 318 (15.5) 1.1 (1.0-1.4) 186 (9.0) 1.0 (0.8-1.2) 330 (16.0) 1.4 (1.2-1.6)
(18.5) 0.9 (0.8-1.1) 364 (15.1) 1.0 (0.9-1.2) 200 (8.3) 0.9 (0.7-1.1) 438 (18.1) 1.1 (1.0-1.4)
400 (19.4) 0.9 (0.8-1.1)
481 (19.9) 0.9 (0.8-1.1)
(19.4) Reference 326 (14.4) Reference 210 (9.3) Reference 300 (13.2) Reference
477 (21.1) Reference
NOTE: Models adjusted for all variables in left column of the table.
married, divorced or separated individuals also reported
an increased prevalence of problems in role physical,
general heath, and vitality domains.
Treatment Factors. Frequencies and percents of
having a poor psychosocial or quality of life outcome
among survivors by treatment characteristics are shown
in Table 4A and B with ORs and 95% CIs from
unconditional logistic regression models.
Emotional Health (BSI-18). In adjusted models, the only
predictor of poor emotional health was previous treatment with cranial radiation, with only modest strength.
Survivors treated with cranial radiation were at a slightly
higher risk of reporting depressive symptoms compared
with those without cranial radiation.
HRQOL (SF-36). After adjusting for gender, age at
diagnosis and survival time, and treatments with
surgery, chemotherapy, and cranial radiation therapy,
were each associated with higher risk of reporting poor
HRQOL in physical function, role physical, and general
health subscales and on the physical component summary. In multiple variable models, history of surgery
was associated with elevated risk of poor HRQOL in
physical function, role physical, bodily pain, vitality, role
emotional, and social function subscales and in physical
and mental components when compared with those
without surgical history, although association magnitude
was modest, except for physical function (OR, 1.9; 95%
CI, 1.5-2.5). Survivors who received chemotherapy
compared with those without reported poor HRQOL
only in general health. Younger age at diagnosis was
associated with decreased risk of poor HRQOL in
physical function, role physical, bodily pain, and general
health subscales and in the physical component sum-
mary. Survivors >25 years reported better HRQOL in
physical function, role physical, bodily pain, general
health, and physical component summary compared
with survivors >30 years.
Discussion
Whereas adult survivors of childhood cancer from the
CCSS report more symptoms of psychological distress
compared with siblings, both groups report better
psychological adjustment than that of population norms.
Survivors report poorer HRQOL in physical and social
but not in mental health domains compared with
siblings. Compared with U.S. population norms, survivors have increased risk of poor HRQOL in physical and
social domains, with the largest effect size in vitality.
Compared with population norms, siblings fare better in
physical function and general health, and both survivors
and siblings report better mental health than does the
general population, as well as high levels of current life
satisfaction. Except for CNS tumor survivors, both
groups also expect high life satisfaction in 5 years. Our
findings add to information from previous CCSS
estimates of health status (24) and chronic disease (27).
Despite their increased risk for poor health status, and
the fact that >70% of childhood cancer survivors report a
chronic health condition, survivors’ expectation of future
life satisfaction is excellent.
Survivors of CNS tumors, lymphoma, bone, and soft
tissue sarcomas have the lowest mean HRQOL scores.
Female gender, lower educational attainment, unmarried
status, annual household income <$20,000, unemployment, lack of medical insurance, and having a major
medical condition are all associated with a higher risk of
Cancer Epidemiol Biomarkers Prev 2008;17(2). February 2008
Cancer Epidemiology, Biomarkers & Prevention
psychological distress and poor outcomes in some
aspects of HRQOL. Previous treatment with cranial
radiation and surgery are associated with poor HRQOL,
particularly in physical domains. Participants diagnosed
<10 years of age or treated in the past 25 years report
better HRQOL than those diagnosed >10 years of age or
treated >30 years ago.
Our findings support the low mean psychological
distress found in a study of 161 childhood cancer
survivors (28, 29) on the SCL-90-R (30), the parent
instrument of the BSI-18, and yet are consistent with
another investigation (31) of 101 survivors where f32%
screened positive for psychological distress on the SCL90-R, with a history of cranial radiation and poor
physical health as predictors. Our results extend earlier
CCSS findings of increased depression and somatization
in survivors of leukemia and lymphoma (9), brain tumor
(8), and solid tumors (10) compared with siblings. Our
findings are also consistent with earlier reports of
associations between poor HRQOL and female gender
(32-35), older age (35), lower educational attainment (33),
unemployment (33), and medical limitations (33). Others
found being survivors >26 years (32) and treatment with
cranial radiation or surgery (34, 35) as risks for poor
physical HRQOL. Younger age at diagnosis and decreased risk of poor physical HRQOL in our study
contradicts another study of 2,152 childhood cancer
survivors (35) that used the Health Utilities Index Mark
III, a discrepancy possibly explained by differences in
the focus of the Health Utilities Index Mark III versus
SF-36.
Although our findings are based on a large sample,
varied diagnoses, and participants from 26 children’s
cancer centers throughout North America, they should
not be considered without taking into account potential
study limitations. First, we used only self-report data to
characterize outcomes. Clinical interviews may have
improved the precision of our estimates, particularly
those related to psychological distress. Second, the SF-36
is a generic HRQOL measure. To investigate the physical
and psychological functioning of these survivors more
systematically, more specific measures may be needed.
Change over time with longitudinal repeated measures
assessments is needed to determine stability of our
findings and the developmental trajectory of HRQOL in
this population. In addition, the survivor participants in
our study were more likely than nonparticipants to be
female, white, married, employed, and college graduates.
It is possible that these successful survivors were more
aware of their levels of achievement and thus either more
or less likely to express dissatisfaction with their
outcome.
Based on our data, we could interpret the findings of
our study as good news. Overall, most of the measures
indicate that survivors and siblings both report lower
psychological distress and better HRQOL, as well as life
satisfaction, in comparison with population norms.
Where there were differences, generally effect sizes were
small, except for the vitality subscale as noted above. In
fact, our sample seems to report significantly better
mental health than that of population norms, with a large
effect size. We could explain our findings as ‘‘posttraumatic growth’’ or the psychological resilience that
develops in coping with adverse circumstances (36, 37).
That is, experiencing childhood cancer or being a young
sibling of a sister or brother with cancer inoculates
individuals to other negative life experiences and
provides them with feelings of life satisfaction and
overall psychological well being. In one study, lower
level of worry during cancer treatment was related to
ultimate life satisfaction (37). On the other hand, there are
some data indicating that most people show life
satisfaction even with very poor health states, such as
amputation (38, 39), and several studies indicating that
survivors of cancers in general and childhood cancers in
particular may be biased reporters and tend to deny
difficulties and overestimate their positive health and
satisfaction (40-44). O’Leary et al. (45) reported from a
sample of Dana-Farber patients participating in CCSS
that survivors had a strong tendency toward an
enhanced self-appraisal and such bias had a differential
effect on self-reported physical and emotional quality
of life.
Unlike smaller cohort studies, our large sample
permits analyses that identify vulnerable subgroups
and suggest specific diagnostic/treatment pathways to
psychological symptoms and poor HRQOL. Understanding reasons for pain in bone tumor survivors or poor
future outlook in CNS tumor survivors might lead to
earlier preventive strategies, such as better pain management during bone cancer treatment or early educational interventions for children with CNS tumors (46).
Rather than implying poor HRQOL in all survivors, we
have identified certain survivor groups with more severe
effect and suggest the need for prospective, longitudinal,
in-depth examination of pathways and mediators of
psychological distress and poor HRQOL. Studies of these
high-risk subgroups can inform strategies designed to
reduce psychosocial and HRQOL sequelae.
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