Purpose: Childhood cancer survivors need regular, risk-adapted, long-term survivor care. This retrospective study describes the proportion of survivors seen for an initial survivor clinic visit within a large pediatric oncology program.
Methods: Patients diagnosed with non-central nervous system childhood malignancies from 2007 to 2012 were followed from the time of survivor clinic eligibility (2 years following completion of therapy) through their initial survivor clinic visit or end of study. Demographic, cancer-related, and logistical factors related to clinic attendance were examined using Kaplan-Meier curves and Cox proportional regressions.
Results: Eligible survivors were 53.0% male, 51.5% non-Hispanic white, and 30.9% survivors of leukemia. Among the 866 eligible survivors for this study, 610 (70.4%) completed their initial visit. After controlling for sex and time eligible, survivors who received surgery only (aHR 0.04 (0.02, 0.08)) or radiation only (0.24 (0.15, 0.39)) and who had Medicaid (0.77 (0.64, 0.92)) were significantly less likely to have an initial visit as were those of black or other/mixed race and those who lived > 25 mi from the clinic (p < 0.01). Survivors aged 6-11 years or 12-17 years at eligibility were significantly more likely to complete an initial visit as compared to those aged 2-5 years (1.55 (1.24, 1.93) and 1.44 (1.14, 1.83), respectively).
Conclusions: Nearly a third of survivors were not seen in a pediatric survivor clinic despite the importance of survivor care. These results identify populations at risk for not pursuing long-term survivorship care.
Implications for cancer survivors: Failure to transition to pediatric survivor care may lead to lifelong non-engagement and incorrect perceptions about future health.
Keywords: Childhood cancer survivorship; Clinic attendance; Late effects surveillance; Long-term follow-up care.