Stroke Training, Research, and Education Toward Capacity with Hydroxyurea (STRETCH)

Introduction: Sickle cell anemia (SCA) is an inherited hematological disease characterized by recurrent painful events, susceptibility to infections, and progressive organ failure. SCA is associated with increased morbidity and mortality, particularly in children under age five, and most significantly impacts resource-limited settings where the capacity for diagnosis, screening for complications, and provision of care are limited. Stroke is a severe complication of SCA that can be prevented through transcranial Doppler (TCD) ultrasonography, a screening tool that identifies children at risk, and treatment with hydroxyurea. We designed Stroke Training, Research, and Education Toward Capacity with Hydroxyurea (STRETCH) to describe how mitigation of stroke risk among children with SCA can be effectively implemented in sub-Saharan Africa, and how TCD screening and hydroxyurea fit into a larger context of safe, effective care.

Methods: STRETCH used a qualitative design, with semi-structured interviews with TCD examiners and stakeholders that were recorded, transcribed, and coded using the Grounded Theory model for thematic analysis. The primary objective was to describe how public health leaders can mitigate stroke risk using a feasible, effective, and sustainable TCD screening, training, and supervision program. Secondary objectives included analysis of operational and systemic factors that influence TCD training; technology and knowledge transfer needed for TCD implementation; the role of public health leaders in low-resource settings; and recommendations for establishing effective care. Interviews were conducted with African examiners trained between 2015 – 2023 at Cincinnati Children’s Hospital Medical Center. Stakeholders at each site included attending physicians, medical officers, and program leaders. Locations included three rural sites in Uganda, Tanzania, and Kenya and five urban sites in Angola, Democratic Republic of Congo, Ghana, and Uganda, all regional referral facilities where patients often travel long distances for medical care they cannot obtain closer to home. All sites gained access to TCD training through a research trial; the supervision program included technical training in-person or by web-based platform, annual meetings, and virtual interactions for skill refinement and maintenance.

Results: Six main categories and 32 subcategories were identified during thematic analysis of 755 coded responses and 744 confirmed codes. These themes and subcategories underscore the importance of sustainable and scalable training methodologies and improved pathways for access to care for SCA in sub-Saharan Africa. Participants reported satisfaction with the TCD training program, noting that in-person training with Africa-based examiners was preferable to a web-based platform, and that ongoing training, supervision, and technical support through collaboration was conducive to skill development. Through communication and problem-solving, the teams learned to creatively manage challenges, developed strong collaborations, and became a cohesive skilled team that can be modeled and scaled based on local context. Participants described the major clinical and socioeconomic impact of SCA on children, families, and communities and emphasized the role of hydroxyurea in preventing complications and decreasing burden on health systems. The STRETCH model was based on thematic analysis integrating education, policy development, and access to hydroxyurea in a holistic approach that leverages partnerships and resources and works collaboratively to build sustainable capacity and improve outcomes.

Conclusions: Children with SCA in sub-Saharan Africa are a neglected population with devastating morbidity and early mortality, and the effects of SCA are far-reaching with broad social, economic, and health system impact. Given the complexities of healthcare infrastructure in Africa, a multifaceted approach is needed to build capacity for TCD screening with hydroxyurea for stroke prevention. STRETCH underscores the importance of North-South global partnerships and the impact of education and technology transfer to build capacity in resource-limited settings. Our results indicate a call to action to improve education for clinicians, families, and community leaders and stakeholder support for health policy to increase access to hydroxyurea.