Expanding Access to Sickle Cell Disease Care in Sierra Leone: The EASEL Pilot Project

Presentation Date: 6/8/2024 Presentation Start Time: 6:00 PM Background Sickle cell disease (SCD) is a major contributor to childhood morbidity and mortality in African countries like Sierra Leone (SL). Limited early diagnosis programs, the limited number of physicians with expertise in hematology, combined with a dearth of extant strategies to combat SCD have led to a paucity of care for children affected by the disease in SL, a problem further compounded by the lack of public understanding of SCD, which perpetuates social stigma and myths about disease causation and results in few people seeking appropriate treatment. We showcase the EASEL Project, a pilot project designed to empower the nursing workforce in Sierra Leone to perform early diagnosis, genetic counseling, and clinical management of sickle cell disease in children. Methods The EASEL project is an academic and private partnership initiative designed to provide basic comprehensive care to children within community hospitals while building capacity within the healthcare system for ongoing improvements in SCD clinical outcomes. The EASEL project leverages the nurse champion model and implementation science to promote the uptake of evidence-based health practices for SCD care. Three aims inform the EASEL project; (1) Conduct a formative evaluation to assess barriers and facilitators to the primary health center provision of SCD case management with a Nurse Champion model; (2) Create an implementation plan for the Sickle Cell Disease Nurse Champion Intervention using Implementation Mapping; and (3) Implement the Nurse Champion model and evaluate its determinants and implementation costs. Results The EASEL project will support nurses with the technical capacity to manage and increase opportunities for children living with SCD to receive uninterrupted access to basic preventative wellness care to experience improved quality of life and reduce overall under-five child mortality. Conclusions There is a need to integrate affordable SCD evidence-based solutions into the existing healthcare system in Sierra Leone. Newborn screening is urgently needed. Quantifying the public health burden of SCD in Sierra Leone needs to be conducted, and there is an urgent need for public awareness campaigns to combat stigma and misunderstandings about SCD and to provide genetic counseling opportunities and initiatives that promote disease avoidance.