A Collaborative, Patient-Centered Initiative to Implement Safe and Effective Transitions of Care in Sickle Cell Disease

Objectives Safe and effective transitions of care (ToC) for adolescents with sickle cell disease (SCD) require alignment between patients and providers on disease understanding, self-management, and the transition process. Despite evidence-based ToC recommendations, implementation remains inconsistent due to provider-, patient-, and system-level barriers. This initiative sought to improve ToC practices through targeted education and collaborative engagement. Methods Multidisciplinary teams from three pediatric SCD centers participated in a multicenter quality improvement initiative from January to November 2024. The initiative included baseline provider assessments, patient-provider collaborative educational sessions incorporating a ToC toolkit, and audit-feedback sessions to identify practice gaps and develop center-specific improvement plans. Pre/post surveys and follow-up assessments evaluated changes in knowledge, confidence and reported practice changes. Results Following the patient-provider collaborative sessions, patients demonstrated knowledge gains in their understanding of SCD and its symptoms (31% vs. 75% reporting very good understanding pre- vs. post-session, p = 0.003), complications of SCD (26% vs. 69%, p = 0.004), and the ToC policy at their treatment center (18% vs. 44%, p = 0.052). Guided by baseline assessments and collaborative sessions, care teams developed strategies to initiate ToC planning earlier in adolescence (60%), implement standardized ToC protocols (40%), perform ToC readiness assessments (40%), and provide patients/caregivers with resources (40%) to optimize ToC practices within their center. Conclusions These findings demonstrate the effectiveness of a formalized ToC toolkit and importance of evidence-based ToC protocol implementation in clinical settings to successfully transition care for patients from childhood into adulthood.