Purpose: In high-income countries (HICs), advances in sickle cell disease (SCD) care have led to >95% survival of children to age 18 years. In low-and-middle income countries (LMICs), like Brazil, survival is approaching 80% by age 18. With higher survival rates, a growing number of young adults need to be prepared (i.e., build health literacy, improve self-efficacy and gain transition skills), transferred, and integrated into adult care. Implementation of evidence-based health care transition (HCT) practices can address this need. Despite the increasing SCD pediatric survival in LMIC, no systematic evidence-based HCT practices are in place. While guidelines to support HCT in HICs exist, the readiness for implementation of HCT practices is unknown in LMICs, therefore implementation cannot be appropriately planned or their environment prepared.
Materials and methods: To address the need for implementation of HCT in Brazil, we plan to undertake a 3-Aim process: Aim 1) Select SCD-specific evidence-based practices for HCT from HICs, Aim 2) Identify barriers and facilitators to implement HCT for SCD in 2 Brazilian institutions (Instituto Estadual de Hematologia, HEMORIO, Rio de Janeiro and Universidade Federal de Sao Paulo, UNIFESP, Sao Paulo), and Aim 3) Adapt evidence-based practices for HCT to the Brazilian institutions. We will begin by examining the contextual factors that influence the successful implementation of HCT practices through surveys to providers, patients, and clinic leadership, with complementary focus groups with a selected sample (Table 1). To investigate the barriers and facilitators, we will conduct a QUANTITATIVE->qualitative mixed-methods evaluation, guided by the Exploration, Preparation, Implementation and Sustainment (EPIS) framework (Figure 1). In addition to examining the context of each site, we will perform a literature synthesis and investigate the mechanisms of action (i.e., what works and how it works) of HCT practices in a HIC program (St. Jude Children’s Research Hospital, Memphis, TN). Using implementation and mechanism mapping, we will define the core components and the adaptable steps required to build capacity and expertise to implement HCT practices in Brazil. Additional focus groups with patients, providers, and clinic leaders at each Brazilian hospital will examine the fit of the adapted approach to their organization. To complement the mechanism mapping process, we will collect data to map the implementation steps and cost for implementation using the Stages of Implementation Completion (Chamberlain P, et al. ImplementSci.2011;6:116.) measure and its associated cost mapping tool, the Cost of Implementing New Strategies to track the entire implementation process.
Results: Our research and implementation teams have been assembled and data collection is underway. Ongoing results will be presented.
Conclusion: Evidence-based HCT services are needed to address the higher survival rates among young adult populations with SCD in LMICs. Our project will be the first to rigorously evaluate the readiness for implementation of HCT in LMIC and to design a context-specific HCT tool for Brazil. Finally, documentation of milestones of pre-implementation will allow us to track and compare the effectiveness and cost of future HCT implementation strategies, ensuring the optimal implementation and sustainability of HCT programs in LMICs.
Figure 1. EPIS as the guiding framework for implementing HCT for SCD in LMICs. We will identify Evidence-based practices (EBPs) for HCT in SCD, assess determinants of implementation in Brazil and begin adapting HCT EBPs for their context. (Aarons GA, et a
Table 1. Mapping of study measures according to the EPIS constructs.
A. HEITZER declares a conflict of interest:
Consultancy, Expert: Global Blood Therapeutics