Tracking and Engaging Disconnected Long-Term Survivors of Childhood Cancer to Improve Adherence to Evidence-Based Screening Guidelines

Project Summary This application is being submitted in response to the Administrative Supplements on Long-term Cancer Survivorship. Our proposed project aims to identify and re-engage adult survivors of childhood cancer who have transitioned from pediatric survivorship care to primary care but are no longer connected to structured survivorship follow-up. The project leverages and builds on institutional data revealing that over 59% of transitioned survivors are lost to follow-up at Nebraska Medicine and the Fred & Pamela Buffett Cancer Center (BCC).The project will use a mixed-methods approach, integrating retrospective EHR data, structured surveys, and qualitative interviews to understand disengagement patterns, evaluate adherence to Children’s Oncology Group (COG) Long-Term Follow-Up (LTFU) guidelines, and explore survivor-identified barriers and facilitators to care. A comparison group of engaged survivors within the adult survivorship clinic will be used to analyze predictors of continued care adherence. This supplement extends the BCC’s mission to promote innovative translational cancer research, excellence in cancer education and training, and outstanding patient-centered cancer care, and to reduce the burden of cancer and cancer health disparities across Nebraska and beyond. Aim 1: Identify and characterize adult survivors of childhood cancer at BCC who were transitioned to primary care and are no longer engaged in survivorship care, using electronic health record (EHR) data. We will use electronic health records (EHR) to identify two groups: (a) survivors who transitioned from pediatric to adult survivorship care and are currently followed in the adult survivorship clinic (control group, n ≈ 60), and (b) survivors who transitioned from pediatric care but are not currently followed in the adult survivorship clinic (experimental group, n ≈ 90). We will compare demographic, clinical, and geographic characteristics, with particular attention to rural and underserved populations. Aim 2: Assess adherence to COG LTFU screening guidelines and unmet needs among disengaged survivors compared to those retained in adult survivorship care. We will administer structured surveys and conduct chart audits to evaluate screening adherence, unmet psychosocial needs, and care navigation gaps for survivors in both groups. Analyses will focus on differences in adherence to recommended surveillance and prevalence of unmet health and psychosocial needs. Aim 3: Explore barriers/facilitators to long-term survivorship care not currently followed in the adult survivorship clinic. Qualitative interviews will be conducted with a purposive sample of survivors from the experimental group (expected n = 20) to identify key barriers to ongoing engagement in survivorship care to inform future re-engagement efforts. Findings will inform the design of future re-engagement strategies.