RECIPE

Title of Protocol:

Recruitment and Engagement in Care to Impact Practice Enhancement for Sickle Cell Disease

Project Rationale:

The Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) project seeks to reduce the science-to-practice gap in sickle cell disease (SCD) by identifying individuals who are not receiving guideline based SCD care. Up to 50% of affected adults do not see SCD specialists, which limits the delivery of disease-specific screenings and treatment with disease modifying therapies. Issues are worsened for individuals living in rural regions or with socio-economic challenges known to accentuate health disparities. This team of investigators has been working to address this problem since the inception of the NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC). In our previous studies, we identified a need to optimize research methodologies to engage individuals in evidence-based SCD care and established foundational terms through a Delphi consensus process, for “unaffiliated patients with SCD” and “SCD specialist”. The current project, RECIPE, will advance these efforts to identify and link unaffiliated patients to SCD specialists by applying implementation science research to adapt existing methods used in human immunodeficiency virus (HIV) care. Similar to SCD, individuals with HIV have faced significant healthcare scrutiny causing reciprocal misgivings about healthcare. In this project, we will adapt models for patient identification and engagement in HIV to SCD using a multi-staged, patient-oriented process. We embed this work in the Interactive Systems Framework for Dissemination and Implementation to ensure high quality implementation and evaluation in each stage of the affiliation process, with emphasis on the readiness of health systems to serve traditionally underserved populations and sustainability of this work in these areas.

Purpose/Objective of Study:

The main purpose of this study is to collect information about individuals living with sickle cell disease including medical history, management and access to healthcare.

Project Goals:

• To find unaffiliated individuals living with SCD

• To engage unaffiliated individuals with SCD in care by utilizing linkage coordinators to help these individuals navigate their way into care.

• Once methods of finding and engaging unaffiliated patients with SCD are optimized, expanding these efforts into other SCD sites will be essentials to ensuring robustness of findings.

Time Committment: 3 study visits over 5 years