Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk factors for psychological distress and poor HRQOL are female sex, lower educational attainment, unmarried status, annual household income less than $20,000, unemployment, lack of health insurance, presence of a major medical condition, and treatment with cranial radiation and/or surgery. Cranial irradiation impacted neurocognitive outcomes, especially in brain tumor survivors. Psychological distress also predicted poor health behaviors, including smoking, alcohol use, fatigue, and altered sleep. Psychological distress and pain predicted use of complementary and alternative medicine. Overall, most survivors are psychologically healthy and report satisfaction with their lives. However, certain groups of childhood cancer survivors are at high risk for psychological distress, neurocognitive dysfunction, and poor HRQOL, especially in physical domains. These findings suggest targeting interventions for groups at highest risk for adverse outcomes and examining the positive growth that remains despite the trauma of childhood cancer.
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. IntroductionAdulthood 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 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 ...
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