Physical and Psychological Late Effects on Health-Related Quality of Life in Long-Term Survivors of Childhood Cancer

Advances in cancer treatments have increased the overall five-year survival rate for children and adolescents with cancer to almost 85% (Howlader et al., 2013). However, the use of intensive treatment modalities to improve survival rates has jeopardized health-related quality of life (HRQOL) of survivors of childhood cancer. Survivors of childhood cancers are likely to experience serious or life-threatening late effects (Berk & Meyers, 2015) which can continue into adulthood (Bassal, 2006; Kevin C. Oeffinger et al., 2006). Late effects refer to various health problems in physical, mental, and social domains that occur after completion of cancer treatment (National Cancer Institute, 2016). Several studies of adults with cancer have identified associations between symptom clusters and poor patient outcomes, typically HRQOL (Dodd, Miaskowski, & Paul, 2001; Kim, Barsevick, Beck, & Dudley, 2012; Miaskowski et al., 2006). There are few studies, however, examining the relationship of symptom clusters and HRQOL in survivors of childhood cancer. The purpose of this study was to examine the impact of late effects on HRQOL in survivors of childhood cancer. This project investigates the association between subgroup membership based on the impact of late effects on HRQOL using cluster mixture modeling. The revised dynamic symptom model (J. Brant, Dudley, Beck, & Miaskowski, 2016) was used as a theoretical framework, which is focused on the relationship between predictors and symptom experience. St. Jude Lifetime Cohort (SJLIFE) study data were used for this analysis. The study participants were diagnosed with childhood cancer and were treated between 1962 and 2002 at the St. Jude Children’s Research Hospital; 3,129 participants were eligible for this study. Using mixture modeling, a person-centered approach was used. The participants were young adult survivors (the mean age at the time of the survey was 31.0 years), were diagnosed with cancer during childhood (mean age of cancer diagnosis was 8.45 years), and were long-term survivors (mean time since cancer diagnosis was 28.10 years). Participants had various types of cancer including leukemia, lymphoma, sarcoma, and central nervous system tumors. Two distinctive subgroups were identified: the “high symptom cluster” group and the “low symptom cluster” group. Among all participants, pain was the most prevalent symptom (75.5%), and disfigurement (55%) and sensation abnormalities (31.1%) were higher. Several variables were associated with the high symptom cluster. Participants who were more than 40 years old at the time of the survey, female, non-Hispanic white, had less education, unmarried, and had lower annual income were more likely to be in the high symptom cluster group. Participants who were in the high symptom cluster group reported lower physical and psychosocial HRQOL compared to those in the low symptom cluster group. Several socioeconomic and clinical variables affected HRQOL among participants in this study. In particular, use of certain types of chemotherapy (e.g., cisplatin, carboplatin, or oxaliplatin) was associated with poorer physical HRQOL and better psychosocial HRQOL. The current study identified symptom cluster groups among young adult survivors of childhood cancers and found meaningful predictors that affect symptom cluster membership and HRQOL outcomes. The findings of this study provide information for health care providers regarding treatment effects and subsequent HRQOL in children with cancer. These findings could be used as a basis for designing an intervention for individuals in the high symptom cluster group. Future research should include children with cancer who are in the various survivorship periods in order to better understand the relationships between symptom clusters and HRQOL across time