Purpose: Survivors of pediatric brain tumors (PBTs) are at high risk for medical late effects, including pain. Although pain is common at PBT diagnosis and during treatment, less is known about survivors' pain after completing therapy. This study examined the prevalence and correlates of pain in long-term PBT survivors enrolled on Project REACH (Research Evaluating After Cancer Health), a cohort study of locally treated cancer survivors. Methods: Participants were 116 PBT survivors (ages 13-32; 51% male; mean 10.6 years from diagnosis) who completed self-report measures of pain and quality of life (QOL). Survivors reporting "moderate pain" ≥2 days/week or "severe pain" ≥1 day/week were classified as pain cases. Correlates of pain were examined using logistic regression. Results: In total 42 participants (36.2%) met pain case criteria with headache and muscular/skeletal pain most common sources of their worst pain (16 and 11 survivors, respectively). In adjusted analysis, pain cases were more likely to be female (odds ratio [OR] = 1.96, p = 0.034), and less likely to be in the older age group (18-22 years) than younger (13-17 years) age group (OR = 0.232, p = 0.006). No other demographic, disease, or treatment variables were associated with pain case status. Survivors categorized as pain cases reported inferior QOL across all domains of the PedsQL. Conclusions: A subset of PBT survivors experience significant pain that negatively impacts QOL years after completing therapy. Clinics caring for PBT survivors must incorporate appropriate pain assessment and treatment into standard care. Research is needed to better understand both risk factors and effective treatment strategies for pain in this vulnerable population.
Keywords: brain tumor; late effects; pain; survivors.