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Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell disease

招募和参与镰状细胞病护理影响实践增强 (RECIPE)

基本信息

批准号：
10444526
负责人：
Lewis Li-Yen Hsu
金额：
$ 130.63万
依托单位：
UNIVERSITY OF ALABAMA AT BIRMINGHAM
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-08-15 至 2027-07-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10444526
关键词：
Address Adult Affect Area Caring Clinic Clinical Clinical Services Comprehensive Health Care Consensus Consultations Country Data Disease Dissemination and Implementation Ensure Evaluation Foundations Funding Future Goals Guidelines HIV Health system Healthcare Individual Interactive Systems Framework Knowledge Link Mentors Methods Modeling National Heart, Lung, and Blood Institute Pathway interactions Patients Population Preventive service Process Program Effectiveness Protocols documentation Provider Readiness Research Research Methodology Research Personnel Science Sickle Cell Anemia Site Specialist System Testing Training Underserved Population Work barrier to care base care providers cost evidence base evidence based guidelines experience health disparity implementation science implementation strategy improved organizational readiness patient engagement patient oriented process evaluation programs recruit rural area service gap social stigma socioeconomics success

项目摘要

PROJECT ABSTRACT The Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) project has a goal 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 may 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.

项目摘要