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

项目摘要 招聘和参与关怀影响实践强化(Recipe)项目有一个目标 通过识别没有接受治疗的人来减少镰状细胞病(SCD)的科学与实践之间的差距 以指南为基础的SCD护理。高达50%的受影响成年人可能看不到SCD专家，这限制了分娩 针对疾病的筛查和疾病修正疗法的治疗。问题变得更糟了 生活在农村地区或面临社会经济挑战的个人加剧了健康差距。这 自NHLBI资助的Sickle项目成立以来，一组调查人员一直在努力解决这个问题 细胞疾病实施联盟(SCDIC)。在我们之前的研究中，我们发现有必要优化 让个人参与基于证据的SCD护理的研究方法和既定的基础术语 通过德尔福共识流程，适用于“无关联的SCD患者”和“SCD专科医生”。海流 Recipe项目将推进这些努力，以识别无关联的患者，并通过应用 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相似，艾滋病毒携带者面临着严格的医疗审查，这引发了相互的疑虑 关于医疗保健。在这个项目中，我们将使患者识别和参与艾滋病毒的模式适应SCD 使用多阶段的、以患者为中心的过程。我们将这项工作嵌入到交互系统框架中 传播和实施，以确保高质量的实施和评估在每个阶段 加入进程，重点是卫生系统准备好为传统上服务不足的人提供服务 这些地区的人口和这项工作的可持续性。

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.