Background: Childhood Hodgkin lymphoma (HL) survivors remain at risk for treatment-related late effects and require long-term survivorship follow-up. Factors associated with sustained survivorship care engagement remain poorly characterized. We leveraged a longitudinal cohort of childhood HL survivors to identify factors associated with ongoing engagement in survivorship care.
Methods: We conducted a retrospective cohort study of pediatric HL survivors diagnosed before age 19 years who attended at least one survivorship clinic visit between 2013 and 2024. Demographic, treatment, and survivorship data were obtained from an electronic health record-based survivorship database. Survivors were risk-stratified for late effects based on chemotherapy and radiation exposures. Survivorship engagement was assessed using the Attendance Continuity Score (ACS), defined as the ratio of observed to expected survivorship visits according to institutional follow-up recommendations. Survivors were categorized as engaged or disengaged based on longitudinal attendance patterns.
Results: Fifty-four HL survivors were included. Median age at diagnosis was 10.9 years, and median time from therapy completion to first survivorship visit was 3.0 years. All survivors received chemotherapy, 53.7% received radiation therapy, and 7.4% underwent hematopoietic stem cell transplantation. Overall, 51.9% were classified as high risk for severe late effects, while 29.6% were at high risk for infertility and 29.6% for secondary breast cancer. Forty-one survivors (75.9%) were classified as engaged and 13 (24.1%) as disengaged. Disengaged survivors were younger at survivorship referral (11.8 vs 14.2 years, p=0.030), first survivorship visit (12.5 vs 14.9 years, p=0.036), and last survivorship visit (15.3 vs 17.6 years, p=0.022). ACS was significantly lower among disengaged survivors (0.54 vs 1.31, p<0.001). Treatment exposures and late-effects risk profiles did not differ between groups.
Conclusions: Nearly one-quarter of pediatric HL survivors disengaged from survivorship care despite substantial risk for treatment-related late effects. Younger age at survivorship referral and program entry was associated with subsequent disengagement, whereas treatment intensity and late-effects risk were not. Earlier entry into survivorship care alone may be insufficient to ensure long-term engagement, highlighting the need for developmentally and culturally tailored survivorship and transition strategies.
Ksenya Shliakhtsitsava, Anandini Rao, Lynn Gargan, Cindy Cochran, Tanya Watt, Eman Rettig, Daniel Bowers, Rebecca Eary, Amy Hughes