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)

• 批准号: 10683371
• 负责人: Lewis Li-Yen Hsu
• 金额: $ 124.28万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 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/10683371
• 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; Funding; Future; Goals; Guidelines; HIV; Health system; Healthcare; Individual; Interactive Systems Framework; Knowledge; Learning; 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; cost; evidence base; evidence based guidelines; experience; health disparity; implementation science; implementation strategy; improved; organizational readiness; patient engagement; patient oriented; primary care provider; process evaluation; programs; recruit; rural area; screening; service gap; social stigma; socioeconomics; success

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 招募和关注影响实践增强（食谱）项目的目标有一个目标 通过识别未接受 基于指南的SCD护理。多达50％的受影响成年人可能没有看到SCD专家，这限制了交货 疾病特异性筛查和修饰疗法的治疗。忘记了问题 居住在农村地区或有社会经济挑战已知的人已知会突显健康差异。这 自NHLBI资助的镰刀成立以来，调查人员团队一直在努力解决这个问题 细胞疾病实施财团（SCDIC）。在我们以前的研究中，我们确定了优化的需求 研究方法使个人参与基于证据的SCD护理并确定了基础术语 通过Delphi共识过程，适用于“ SCD无关患者”和“ SCD专家”。电流 Project，食谱将通过申请来促进这些努力，以识别并将非附属患者与SCD专家联系起来 实施科学研究，以适应人类免疫缺陷病毒（HIV）护理中使用的现有方法。 与SCD类似，艾滋病毒患者面临着严重的医疗保健审查，引起了互惠的疑虑 关于医疗保健。在这个项目中，我们将适应患者识别和参与艾滋病毒的模型到SCD 使用多阶段，面向患者的过程。我们将这项工作嵌入到交互式系统框架中 传播和实施以确保在每个阶段的高质量实施和评估 会员过程，重点是卫生系统的准备，以服务传统服务不足 这项工作在这些领域的人口和可持续性。