JMIR Publications

ABSTRACT

Background:

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

Objective:

This aim of the proposed study is to test the feasibility and acceptability of a CHW-Integrated model for SCD.

Methods:

This protocol is for a multi-methods study to evaluate the feasibility and efficacy of an integrated CHW intervention. The intervention includes CHW-led patient education and care coordination. Adults with SCD (ages 18-45) will be recruited from the Augusta University Sickle Cell Center’s satellite clinic in Albany, Georgia. Quantitative outcomes include patient satisfaction, self-care behaviors, and clinical metrics. Qualitative data from semi-structured interviews will assess intervention acceptability.

Results:

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.

Conclusions:

Despite national calls for improved care coordination and disease management in this population, few published protocols detail community-based, culturally aligned approaches that center the lived experiences and structural barriers faced by adults with SCD. Our study fills a gap in literature by highlighting a theory-informed, multi-method study protocol for evaluating the feasibility, efficacy, and acceptability of integrating community health workers into a patient-centered coordinated care model for adults with sickle cell disease (SCD). This protocol outlines a scalable, community-embedded strategy that may inform future clinical trials and implementation efforts. Clinical Trial: NA