Abstract
The purpose of this study was to identify characteristics associated with health-related quality of life (HRQOL) among long-term survivors of adolescent cancer enrolled in the Childhood Cancer Survivor Study. Thirty percent of survivors reported poor physical and/or mental HRQOL. Race/ethnicity, education, and head/neck disfigurement were significantly associated with poor mental HRQOL, while sex, age, household income, obesity, alkylating agents, pelvic radiation, head/neck or limb disfigurement, and walking with a limp were associated with poor physical HRQOL. Identification of high-risk adolescent cancer patients may facilitate timely intervention to attempt to minimize the impact of cancer and treatment on subsequent quality of life.
Keywords: Adolescent cancer survivor, Quality of life
Introduction
The 5-year survival rate for all pediatric cancers combined is now 80%.1 As these rates increase and more patients survive into adulthood, it is important to understand both how the cancer experience impacts future quality of life, and to know who is most at risk for poor quality of life.
Adolescence is characterized by physiological, cognitive and behavioral changes2 that contribute to increased concern with body-image, and to the desire to transition from the dependence of childhood to the independence of adulthood.2 Adolescents often have difficulty in situations where they perceive a lack of control.3 The experience surrounding cancer diagnosis and treatment is a situation that may be viewed as the ultimate loss of control and may result in increased anxiety and emotional distress. In this report, we describe factors associated with poor HRQOL among those diagnosed as adolescents. We hypothesize that, in addition to sociodemographic characteristics, disfigurement is associated with an increased risk of reporting poor HRQOL.
Patients and Methods
Participants for this study were selected from the Childhood Cancer Survivor Study (CCSS),4,5,6 limited to those diagnosed from ages 10 to 18 years, who participated in the psycho-social portion of the 2003 Follow-Up survey and who consented to medical record abstraction. Those diagnosed with a second malignant neoplasm before the 2003 Follow-Up survey were excluded so as to study only those characteristics related to the adolescent cancer experience.
Our primary outcome of interest was self-reported health-related quality of life (HRQOL), defined by the Medical Outcomes Short Form-36 (SF-36). T-scores were determined for the two summary scales, physical and mental HRQOL, dichotomized at one standard deviation (SD = 10) below the general population mean (mean=50). Participants with a t-score ≤ 40 were considered to have poor HRQOL. Candidate predictors of HRQOL included baseline demographics including sex, race/ethnicity, household income and education, body mass index (BMI), self-reported disfigurement and treatment related variables such as surgery, chemotherapy, and radiation.
Descriptive statistics including frequencies, means and standard deviations, medians and ranges were calculated. Multivariable logistic regression models were generated for each outcome, poor physical and mental HRQOL, using backward selection methods to identify significant predictors. Variables with a p value of <0.1 were retained in the final model. All analyses were done using SAS software version 9.3 (SAS Institute, Cary, NC).
Results
Characteristics of the study population are shown in table 1. Of the 2,064 survivors, 49% were female and 92% were White, non-Hispanic. 44% had a college degree, with 25% having a household income ≥ $60,000. Mean (SD) age at diagnosis was 13.8 (2.4) years. The majority were diagnosed with leukemia or lymphoma (65%) and treated with radiotherapy (66%). Some form of disfigurement was reported by 67% of the sample.
Table 1.
Characteristics of study population
| Survivors n (%)(n = 2003) |
Poor Mental HRQOL n (%)(n = 343) |
Poor Physical HRQOL n (%)(n = 360) |
|
|---|---|---|---|
| Sex | |||
| Male | 1050 (52) | 161 (47) | 161 (45) |
| Female | 953 (48) | 182 (53) | 199 (55) |
| Race/Ethnicity | |||
| White, non-Hispanic | 1837 (92) | 309 (90) | 323 (90) |
| Black, non-Hispanic | 58 (3) | 9 (3) | 11 (3) |
| Hispanic | 54 (3) | 9 (3) | 16 (4) |
| Other | 48 (2) | 15 (4) | 8 (2) |
| Unknown | 6 (<1) | 1 (<1) | 2 (1) |
| Education | |||
| Less than high school | 100 (5) | 26 (8) | 34 (9) |
| High School | 263 (13) | 52 (15) | 66 (18) |
| Some College | 649 (32) | 114 (33) | 112 (31) |
| Bachelor’s degree or greater | 895 (45) | 132 (38) | 121 (34) |
| Missing/ Unknown | 96 (5) | 19 (6) | 27 (8) |
| Household Income | |||
| <$20,000 | 326 (17) | 75 (24) | 93 (28) |
| $20,000 to <$40,000 | 575 (29) | 108 (31) | 105 (29) |
| $40,000 to <$60,000 | 446 (22) | 60 (18) | 62 (17) |
| Over $60,000 | 518 (26) | 72 (21) | 75 (21) |
| Missing/Unknown | 138 (5) | 28 (8) | 29 (8) |
| Marital Status | |||
| Never married | 707 (35) | 125 (36) | 104 (29) |
| Married | 1096 (55) | 178 (51) | 210 (58) |
| No longer married | 156 (8) | 34 (9) | 36 (10) |
| Missing/Unknown | 44 (2) | 13 (4) | 10 (3) |
| Age at cancer diagnosis (years) | |||
| Mean (SD) | 13.7 ± 2.4 | 14.0 ± 2.3 | 13.5 ± 2.3 |
| 10 to 14 | 1228 (61) | 223 (65) | 206 (57) |
| 15 to 18 | 775 (39) | 120 (35) | 154 (43) |
| Age at SF-36 | |||
| Mean (SD) | |||
| Range | 37.2 ± 5.0 | 38.2 ± 5.3 | 36.8 ± 5.1 |
| 25 to 34 | 666 (33) | 125 (36) | 95 (26) |
| 35 to 44 | 1175 (59) | 193 (56) | 218 (61) |
| 45 + | 160 (8) | 25 (7) | 46 (13) |
| BMI | |||
| <18 | 84 (4) | 17 (5) | 21 (6) |
| 18 to 24 | 1076 (54) | 192 (56) | 163 (45) |
| 25 to 30 | 574 (29) | 88 (26) | 96 (27) |
| 30 + | 239 (12) | 41 (12) | 75 (21) |
| Missing/Unknown | 30 (2) | 5 (1) | 5 (1) |
| Cancer diagnosis | |||
| Leukemia | 421 (21) | 63 (18) | 56 (16) |
| Central nervous system | 281 (14) | 62 (18) | 54 (15) |
| Hodgkin disease | 446 (22) | 79 (20) | 80 (22) |
| Non-Hodgkin lymphoma | 223 (11) | 39 (11) | 29 (8) |
| Wilms tumor | 19 (1) | 3 (1) | - |
| Neuroblastoma | 5 (<1) | - | - |
| Soft tissue sarcoma | 225 (11) | 36 (11) | 39 (11) |
| Bone cancer | 383 (19) | 71 (21) | 100 (28) |
| Treatment exposure | |||
| Surgery | |||
| Lower limb amputation | 197 (10) | 31 (9) | 57 (16) |
| Other amputation/ unspecified limb | 37 (2) | 9 (3) | 7 (2) |
| None | 1685 (87) | 289 (84) | 278 (77) |
| Missing/Unknown | 84 (4) | 14 (4) | 18 (5) |
| Chemotherapy | |||
| Anthracyclines | 899 (45) | 146 (43) | 167 (46) |
| Alkylating agent | 1163 (58) | 197 (57) | 222 (62) |
| Platinum | 139 (7) | 32 (9) | 28 (8) |
| Bleomycin | 225 (11) | 36 (11) | 43 (12) |
| Epipodophyllotoxins | 118 (6) | 19 (6) | 23 (6) |
| Site of Radiation Exposure | |||
| Brain | 518 (26) | 88 (26) | 84 (23) |
| Chest | 526 (26) | 88 (26) | 93 (26) |
| Other head | 137 (7) | 19 (6) | 21 (6) |
| Neck | 495 (25) | 85 (25) | 85 (24) |
| Abdomen | 340 (17) | 48 (14) | 69 (19) |
| Spine | 136 (7) | 16 (5) | 27 (8) |
| Pelvis | 278 (14) | 41 (12) | 60 (17) |
| Limb | 140 (7) | 16 (5) | 26 (7) |
| TBI | 30 (2) | 2 (1) | 4 (1) |
| Any | 1309 (65) | 220 (64) | 232 (65) |
| Disfigurement | |||
| Hair loss | 269 (13) | 56 (16) | 57 (16) |
| Scarring of head or neck | 456 (23) | 111 (32) | 94 (26) |
| Scarring of chest or abdomen | 642 (32) | 117 (34) | 133 (37) |
| Scarring of arms or legs | 451 (23) | 86 (25) | 118 (33) |
| Walk with a limp | 310 (15) | 53 (15) | 109 (30) |
Data are presented as n (%) or mean ± standard deviation. Abbreviations: SF-36 – Medical Outcomes Short Form-36; BMI – Body Mass Index; TBI – Total body irradiation.
Race/ethnicity and disfigurement were significantly associated with poor mental HRQOL, with non-white survivors of adolescent cancer and those with disfigurement of the head/neck being more likely to report poor mental HRQOL (table 2). Female sex, older current age, low household income (<$20,000), obesity, exposure to alkylating agents, radiation to the pelvis, walking with a limp and disfigurement of the head/neck or limbs were all significantly associated with poor physical HRQOL. Relative to a high school education, a college education was associated with decreased reporting of both poor mental and physical HRQOL.
Table II.
Predictors of poor mental HRQOL and poor physical HRQOL
| Poor Mental HRQOL OR (95% CI) |
Poor Physical HRQOL OR (95% CI) |
|
|---|---|---|
| Sex | ||
| Male | 1.00 | |
| Female | 1.74 (1.31, 2.30) | |
| Race/Ethnicity | ||
| White, non-Hispanic | 1.00 | |
| Black, non-Hispanic | 0.90 (0.43, 1.87) | |
| Hispanic | 1.03 (0.48, 2.27) | |
| Other | 2.51 (1.30, 4.82) | |
| Education | ||
| Less than high school | 1.22 (0.69, 2.16) | 1.51 (0.84, 2.71) |
| High School | 1.00 | 1.00 |
| Some college | 0.83 (0.57, 1.20) | 0.60 (0.40, 0.89) |
| Bachelor’s degree or greater | 0.67 (0.47, 0.97) | 0.55 (0.37, 0.82) |
| Household Income | ||
| $10,000 to <$20,000 | 1.90 (1.26, 2.86) | |
| $20,000 to <$40,000 | 1.05 (0.72, 1.53) | |
| $40,000 to <$60,000 | 0.89 (0.59,1.37) | |
| Over $60,000 | 1.00 | |
| Age at SF-36 | ||
| 25 to 34 | 1.0 | |
| 35 to 44 | 1.33 (0.96, 1.83) | |
| 45 + | 2.26 (1.37, 3.70) | |
| BMI | ||
| <18 | 1.37 (0.98, 2.15) | |
| 18 to 24 | 1.0 | |
| 25 to 30 | 1.20 (0.87, 1.67) | |
| 30 + | 2.60 (1.77, 3.83) | |
| Treatment | ||
| Alkylating agent | 1.37 (1.03, 1.83) | |
| Radiation to pelvis | 1.63 (1.13, 2.35) | |
| Disfigurement | ||
| Scarring of head or neck | 1.84 (1.41, 2.41) | 1.37 (0.99, 1.90) |
| Scarring of arms or legs | 1.25 (0.95, 1.66) | 1.45 (1.06, 1.98) |
| Walk with a limp | 3.26 (2.33, 4.56) | |
Abbreviations: OR (95% CI) – Odds Ratio and 95% Confidence interval. SF-36 – Medical Outcomes Short Form-36; BMI – Body Mass Index.
Discussion
This study sought to identify factors associated with poor physical and mental HRQOL among adult survivors of adolescent cancer. This work builds on a previous CCSS study that found those diagnosed between 10 and 20 years of age had the highest risk of poor physical HRQOL.7 Physical susceptibility, combined with diagnosis and treatment during a particularly turbulent emotional developmental stage, suggests that this subgroup of survivors may be at high risk for poor HRQOL and therefore warranted further study.
This study identified race/ethnicity and disfigurement as associated with poor mental HRQOL, and sex, education, household income, disfigurement, current age, obesity, and exposure to alkylating agents and/or radiation to the pelvis as associated with poor physical HRQOL. The results of this study are in agreement with previous studies among pediatric cancer survivors that found minority status8 and disfigurement of the head/neck and limb9 was associated with poor mental health outcomes. Additionally, when considering the broader age range for survivors of childhood and adolescent cancer, previous studies have identified obesity,10 female sex,7,11–13 educational attainment7,14, household income,7,14 increased age,14 disfigurement9 and pelvic irradiation14 as predictors of poor HRQOL.
It is not entirely surprising to find disfigurement to be so strongly associated with poor physical and mental HRQOL in survivors diagnosed during adolescence. Adolescence is the stage during which a sense of identity is formed.15 Psychologists Erikson16 and Seltzer17 assert that peer-group membership is necessary to healthy identity development since it allows the adolescent to decrease psychological dependence on their parents, yet retain a sense of belonging.18 A cancer diagnosis, its treatment, and its related sequelae may threaten peer-group membership, by denying the adolescent opportunity for membership physically, because s/he is undergoing treatment and therefore not able to attend school or social events, or emotionally because of perceived differences between the adolescent cancer patient and his/her “normal” peers. Limited interaction with peers may lead to a distorted sense of identity, and combined with physical deformity, likely affects adult HRQOL.
The results of this study suggest two possible types of interventions. To address the emotional reaction to head/neck disfigurement, increased social support and enhanced self-efficacy would be advised.19 Cognitive behavioral therapy has been demonstrated an effective therapeutic approach for this purpose.20 Related to poor physical HRQOL, results would suggest targeting a weight loss program, as obesity is the only modifiable risk factor. Given that higher education was associated with better mental and physical HRQOL, an educational intervention may also be explored as a route of enhancing adjustment to late-effects of cancer survivorship.
It is important to interpret these results keeping in mind the following limitations. First, our outcome was obtained by self-report. Second, this is a fairly young cohort of survivors with 90% of participants younger than age 45 at evaluation of HRQOL. It is possible that some late effects of treatment have not yet occurred, and we are therefore underestimating the true prevalence of poor physical HRQOL. Additionally, some participants may be too young to have experienced fertility issues, employment difficulties, difficulties obtaining health insurance, etc.; all of which may contribute to poor mental HRQOL.
This report identifies characteristics that may help identify childhood cancer survivors at the highest risk for reporting HRQOL. Early identification of these patients will allow clinicians to connect survivors of adolescent cancer with the appropriate resources and interventions in a timely manner, perhaps minimizing the impact of cancer and its treatment on the adolescent survivors’ future quality of life.
Supplementary Material
Acknowledgments
Research grant support: National Cancer Institute grant CA55727 (LLR). St. Jude investigators also supported by the Cancer Center Support (CORE) grant CA 21765 and by ALSAC.
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