Background: Sickle cell disease (SCD) is a red blood cell disorder affecting millions of people across the globe. SCD is characterized by crescent-shaped hemoglobin that can stick together and to the walls of blood vessels, causing decreased blood flow, pain, and ischemia. Advances in medical management have increased life expectancy and highlighted the need to standardize policies surrounding transitions of care from pediatric to adult management of SCD. The transition period for this population is high-risk and associated with increased healthcare utilization, costs, and morbidity and mortality. Research has demonstrated that transition policies improve readiness, promote continuity of care, and enhance health outcomes for patients with SCD. The purpose of this policy analysis was to evaluate and compare three policy options, including current practice within the local health system, to inform future sickle cell program direction.
Methods: Three policies currently in practice were compared using Collins’ adaptation of Bardach’s eight-fold path for policy analysis. This method evaluates policies by focusing on the content of each option, then leveraging data and evidence to project outcomes and guide policymaking. The researcher collected supplemental data to inform the policy analysis, including interviewing stakeholders from organizations with SCD transition programs, and electronic medical record (EMR) review. Qualitative interview data were coded and grouped into categories to highlight themes and provide context on policy options. The local health system’s EMR was reviewed for all patients transitioning from pediatric to adult SCD care between 2021 and 2024, and data were collected on the total number of patients affected by transition policies.
Results: After analyzing the data and comparing existing policies, it was determined that a gap exists within the local health system surrounding the transition period for inpatients with SCD, despite having a robust outpatient protocol. Interviews revealed that the role of a transition coordinator is critical to a successful transition process, and that having different teams managing inpatient and outpatient care leads to communication barriers and patient distrust. EMR review indicated that 68 patients transitioned to adult management within the specified timeframe, with an average of 17 per year. Interviews at external institutions highlighted the success of standardized transition education, and the importance of appointment adherence in the overall transition process. The two external policies informed education standards, addressed metrics limiting continuity of care, and established standardized management for patients with SCD in the adult setting.
Conclusions: The best policy for the local health system to adopt would be a mix of the three policy options reviewed. Areas of focus for this comprehensive plan should include standardized education, yearly transition-readiness assessments, pre-transfer visits with the adult medical team, increased frequency of meetings between the pediatric and adult teams, development of a documented care plan including a date of transition and specified metric tracking. With advances in medical management leading to increased life expectancy for patients with SCD, it remains imperative to standardize transitions of care for this high-risk patient population.