Objective: Survivors of childhood cancer experience late effects as a result of their cancer treatment. Evidence for the prevalence of pain as a late effect has been equivocal. This study aimed to describe the prevalence and patterns of pain and biospsychosocial variables that may be related to pain in this population. Method: Survivors of childhood cancer (n = 299; 52.5% male; median age = 16. 1[4.6-32.6] years; years off therapy = 9.1[2.0-23.7]) were included. Survivors completed a health assessment questionnaire as part of their long-term survivor clinic appointment (median = 3.0 appointments, range = 1.0-7.0) annually or biannually between 2014 and 2017 (Time 1-Time 4). Prevalence of pain was examined and latent class analysis (LCA) was used to identify patterns of pain based on longitudinal reports of pain. Binary logistic regression examined biopsychosocial variables at Time 1 (T1) associated with class membership. Results: Forty-seven percent of survivors reported pain during at least one clinic visit. Headaches were the most prevalent type of pain (26.4%). Survivors of Wilms' Tumor and Ewing's Sarcoma reported the highest prevalence of pain (51.5% and 50.0%, respectively). LCA revealed two clinically relevant profiles: "infrequent or no pain" (74.3%) and "persistent pain" (25.7%). Logistic regression showed that female sex (odds ratio, OR = 2.69, 95% confidence interval, CI [.99, 7.31]), depressive symptomatology at T1 (OR = 2.27, 95% CI [1.31, 3.94]), and drinking to intoxication at T1 (OR = 3.07, 95% CI [1.03, 9.15]), were related to persistent pain. Conclusion: Pain is prevalent among survivors of childhood cancer. Future research should characterize the experience of pain in this population so interventions may be developed. Assessment of pain during regular long-term follow-up appointments is warranted.
Pediatric donors may be at increased risk of psychological and social challenges following hematopoietic cell transplantation (HCT). Through a retrospective chart review, we evaluated the health-related quality of life (HRQL) of pediatric donors over time and examined facilitators and barriers to implementing a longitudinal psychosocial assessment. Fifty-one pediatric donors (
M
= 10.7 years,
SD
= 3.7) completed an HRQL questionnaire across six time points (T1 to T6) from prior to donation to 2 years after. Change in mean scores was assessed using a linear mixed-effect model for repeated measures design. Facilitators and barriers to implementation were examined. HRQL of pediatric donors improved between T1 and T6 with significant change in physical, emotional, and overall functioning. Facilitators to retention included the support of a clinical coordinator. Barriers to implementation included the absence of infrastructure to maintain contact with pediatric and their families. HRQL of pediatric donors of HCT improved steadily over time. Pattern of results suggests a need to further explore factors that contribute to change across time. Development of a longitudinal standardized assessment protocol that can be prospectively and feasibly implemented is integral to supporting the well-being of this group.
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