An Informatics Approach to Enhance Care for Childhood, Adolescent and Young Adult Cancer Survivors Through Population Health Management

Introduction Adolescent and young adult (AYA) cancer survivors are at significant risk for late treatment-related effects yet face challenges when transitioning to survivorship-focused care and longitudinal follow-up. Population-level tools in the electronic health record (EHR) offer a pragmatic approach to track patients and optimize care. Methods The Seattle Children’s Hospital Cancer Survivor Program created a population health management system, using tools embedded within the EHR, based on a validated registry of AYA survivors. We developed a dynamic dashboard to make care gaps visible survivorship care, provide exposure-based pulmonary and cardiac toxicity surveillance, and support transition to adult care. We also built reports to facilitate real-world data analysis of the transition to survivorship care and longitudinal follow-up in a retrospective cohort of AYA survivors. We analyzed data from the cohort to explore subgroup differences in survivorship care. Results Among survivors who finished treatment between January 1, 2021, and April 30, 2022 (n=220), 47% completed a long-term follow-up visit. There were no differences in the likelihood of follow-up based on age categories (p=0.36). For survivors with established long-term follow-up (n=743), 76% received longitudinal care. Compared with children, adolescent survivors (OR 0.51, 95% CI 0.29-0.9), emerging young adults (OR 0.39, 95% CI 0.24-0.63), and young adults (OR 0.10, 95% CI 0.05-0.18) were less likely to have a survivorship visit in the preceding 30 months. This difference was attenuated when analysis was restricted to survivors <22 years old and adjustment for years off therapy, with OR of 0.67 (95%CI 0.37-1.21) and 0.82 (0.45-1.50) among AYAs compared to children as the referent group. Conclusion An EHR embedded population health platform represents a feasible approach to measure longitudinal follow-up care and transitions among AYA survivors. Clinical informatics tools have the potential to drive innovation and enhance evidence-based, guideline-concordant care to mitigate late effects in this population.