Sub-Saharan Africa bears more than 75% of the global burden of sickle cell disease (SCD), where limited newborn screening, diagnostic programs, and health care services result in high early childhood mortality. To address this challenge, the American Society of Hematology (ASH) established the Consortium on Newborn Screening in Africa (CONSA) to demonstrate the benefits of newborn hemoglobinopathy screening and early, continuous clinical intervention for babies diagnosed with SCD. CONSA is comprised of nine clinical sites in seven countries: Ghana, Liberia, Nigeria, Kenya, Tanzania, Uganda and Zambia. To date, results from 158,736 screened babies revealed 2201 (1.39%), with SCD, 25,708 (16.20%) with S and 2531 (1.59%) C trait, and 1814 (1.14%) with another variant. Of those diagnosed with SCD, only 44% have returned to CONSA sites for an initial clinical visit.

To promote linkage to follow-up and clinical care, improve access to evidence-based interventions, and monitor health of children diagnosed with SCD, CONSA aims to deploy Community Health Workers (CHWs). Here we describe the approach and initial training of CHWs to perform the roles described above.

Each country in CONSA has an existing national policy framework which establishes CHWs as community-based components of the health system, including their expected roles and responsibilities. Incorporation of SCD support within the sites' existing CHWs networks aims to aid program success and sustainability. To accommodate variability in the level of prior training among CHWs across sites, CONSA defined a minimum skill set required for participation in CONSA training. To implement this initiative, we developed a two-day training curriculum, including a guide to help facilitators train CHWs across various CONSA sites. The facilitator guides include key information on symptoms, home care interventions and available facility based treatment for SCD, along with key messages for community health education, strategies for counselling, and guided materials/exercises to enhance learning. Facilitators trained CHWs to support children who have not attended clinical visits, to conduct health education to reduce stigma around SCD in the community, and to promote newborn screening. We developed job aids for use in health education and counselling in the community, as well as pocket-sized guides translated into their local languages. A knowledge assessment was administered before and after all trainings to measure impact of the training.

During Kenya's initial site training, 81 CHWs were trained (61 (76%) female), of whom 63 (78%) had no prior dedicated training on SCD. Across the cohort, the most common age category was 40-49 years and the most common level of education was secondary school. The pre- and post-training knowledge assessments were completed by 72 (89%) participants, and 9 completed only the pre-test or post-test. The mean pre-test score was 71% (range: 25-95%) and post-test improved to 85% (range: 37-100%), with a mean change of 15% (P<0.01). Among CHWs, community health practitioners with secondary education had the greatest degree of test improvement compared to CHWs with other levels of education. On the pre-test, the most frequently missed question was related to interventions that improve health outcomes for persons with SCD. The areas with the most significant knowledge gain were the early signs and symptoms of SCD, danger signs in SCD, and the role of the CHW in the prevention of SCD complications. On both the pre- and post-tests, a majority of participants correctly addressed common misconceptions about SCD. A second training was held in Kaduna, Nigeria, we trained an additional 12 CHWs. All participants had a diploma as their highest level of education and had previously participated in some training on SCD. Pre- and post-training knowledge assessments were completed by all participants. Over the training, the knowledge assessment scores increased by 7% on average (pre-test: mean 90%, range: 83-100%; post-test: mean 98%, range: 94-100%; P<0.01). Analysis of those knowledge tests are ongoing.The CHW Initiative successfully enhanced knowledge of SCD diagnosis and care and prepared CHWs to be key partners in strengthening retention in care for children living with SCD. Trainings are now being implemented across all CONSA sites. We will evaluate the impact of CHWs trained in SCD on improving the attendance of affected babies at follow-up for clinical care.

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2025
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