Community Health Worker-Integrated Model for Sickle Cell Disease Management: Protocol for a Feasibility Study

Sickle cell disease (SCD) is a chronic inherited blood disorder that disproportionately affects African Americans. Managing SCD is complex, often requiring coordination of care among multiple health care professionals. These care challenges result in fragmented service delivery and poor health outcomes. Integrating community health workers (CHWs) into patient-centered coordinated care may enhance disease management and patient satisfaction with the care received.

The proposed study aims to test the feasibility and acceptability of a CHW-integrated model for SCD management.

This protocol is for a multimethod study to evaluate the feasibility of an integrated CHW intervention. The intervention includes CHW-led patient education and care coordination. Adults with SCD (aged 18-45 years) will be recruited from the Augusta University Sickle Cell Center's satellite clinic in Albany, Georgia. Quantitative outcomes include self-care behaviors and patient satisfaction. Qualitative data from semistructured interviews will be used to assess the acceptability of the intervention.

The proposed study will provide preliminary data on the impact of a CHW-integrated model on care coordination and self-management among adults with SCD. As of March 2026, we have enrolled 16 participants.

Despite national calls for improved care coordination and disease management in this population, few published protocols detail community-based, culturally aligned approaches that center on the lived experiences and structural barriers faced by adults with SCD. Our study addresses a gap in the literature by highlighting a theory-informed, multimethod study protocol for evaluating the feasibility, effectiveness, and acceptability of integrating CHWs into a patient-centered coordinated care model for adults with SCD. This protocol outlines a scalable, community-embedded strategy that may inform future clinical trials and implementation efforts.