Implementing a Community Health Worker–Embedded Transition Model for Sickle Cell Disease in a Municipal Safety-Net System
Adjoa Mante, Leo G Eisenstein, Abigail Chamberlain, Candace Alphonso, John Muthu, Sana Usmani, Nichola Davis, Kenneth A RivlinAbstract
Background
The transition from pediatric to adult care is a high-risk period for adolescents and young adults with sickle cell disease (SCD), marked by care fragmentation, loss to follow-up, and increased mortality in early adulthood. Patients and caregivers identify structural differences between pediatric and adult care models, limited transition readiness, and stigma within health systems as key barriers. Although transition navigators and community health workers (CHWs) have been proposed to mitigate these gaps, limited data describe structured implementation of CHW-supported transition models within large municipal safety-net systems. New York City Health + Hospitals (NYC H+H), the nation’s largest public healthcare system, provides care to a substantial population of individuals with SCD and is well positioned to test scalable transition interventions. We conducted a single-site pilot to evaluate the feasibility and early implementation outcomes of embedding a CHW within pediatric hematology to support structured transition to adult care.
Methods
This implementation pilot was conducted at Kings County Hospital, an NYC H+H site providing comprehensive pediatric and adult SCD care. Following review of transition navigator models at peer institutions, we developed a CHW workflow tailored to the needs of transition-age patients within our safety-net setting. Using iterative Plan-Do-Study-Act (PDSA) cycles, we refined timing of CHW introduction, coordination between pediatric and adult hematology clinics, and appointment scheduling processes. The CHW was embedded in pediatric hematology clinic sessions and introduced to patients aged 16–20 years during routine visits. The CHW conducted structured transition discussions focused on readiness, system navigation, and adult clinic engagement as patients approached age 21. In accordance with National Alliance of Sickle Cell Centers (NASCC) guidance, successful transfer was defined as completion of two adult hematology visits within 12 months of the final pediatric hematology visit. Baseline data were reviewed to characterize transfer patterns prior to implementation. Early post-implementation outcomes were assessed descriptively.
Results
The CHW transition workflow was launched in October 2025. Four patients were identified as eligible for transfer from pediatric to adult hematology at the pilot site between October 2025 and April 2026, (50% female). All eligible patients were introduced to the CHW during pediatric clinic sessions and participated in transition readiness discussions. By February 2026, 100% (4/4) of eligible patients completed two adult hematology visits within 12 months of their final pediatric visit, meeting the predefined transfer metric. This represents successful implementation of the transition workflow during the initial pilot period. The intervention was feasible to integrate within existing clinic structures, requiring no additional physician time and leveraging existing adult hematology capacity within the same institution. Iterative refinement during early PDSA cycles improved coordination between clinics and appointment completion.
Conclusions
This single-site pilot demonstrates the feasibility of embedding a CHW within pediatric hematology to support structured transition to adult SCD care in a municipal safety-net health system. Early implementation outcomes suggest that the CHW model can facilitate completion of defined transfer milestones within existing clinical infrastructure. Although limited by small sample size and short follow-up, these findings support further longitudinal evaluation and potential expansion of the model across additional NYC H+H sites. Structured, CHW-supported transition workflows may represent a scalable strategy to reduce care fragmentation during a high-risk period for young adults with SCD.