Recruitment and Engagement in Care to Impact Practice Enhancement for Patients with Sickle Cell Disease: Study Protocol

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Abstract Objectives To adapt an evidence-based linkage coordinator model used in HIV care to identify, engage, and link adults with sickle cell disease (SCD) who are unaffiliated from specialty care to SCD specialists, and to assess implementation readiness, processes, outcomes, and costs across diverse SCD centers. Methods This mixed-methods, multi-site study is guided by the Interactive Systems Framework for Dissemination and Implementation and the updated Consolidated Framework for Implementation Research. The intervention will be implemented in two waves across 10 SCD clinic sites (4 Wave 1; 6 Wave 2). Linkage coordinators will locate unaffiliated adults (no non-acute visit with an SCD specialist in > 1 year) through multiple pathways and support engagement and linkage to specialty care. Quantitative and qualitative data will be collected pre/post implementation to assess organizational readiness, processes, reach/affiliation outcomes, patient experience, and intervention costs. Results As a study protocol, results are not yet available. The study will report implementation readiness, reach (proportion successfully contacted among those referred), linkage/affiliation (completion of a non-acute specialty appointment), patient-reported experiences, and site-level costs, with comparisons across contexts and waves. Conclusion The RECIPE study will generate evidence to support scalable strategies for locating and engaging unaffiliated adults with SCD and for building readiness and capacity to implement linkage coordination in diverse SCD centers, with potential relevance to other conditions affected by health disparities.

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