Leveraging behavioral economics to equitably implement cascade screening in individuals with familial hypercholesterolemia in partnership with the FH Foundation

与 FH 基金会合作，利用行为经济学对家族性高胆固醇血症患者公平地实施级联筛查

• 批准号: 10585100
• 负责人: Rinad Sary Beidas
• 金额: $ 64.01万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-03-01 至 2027-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10585100
• 关键词: Leveraging; behavioral; economics; equitably; implement

The proposed project leverages our longstanding partnership with the Familial Hypercholesterolemia (FH) Foundation, a nonprofit research and advocacy organization, to refine and test two promising approaches to implement cascade screening in individuals with FH. Despite evidence-based guidelines for FH diagnosis and treatment, over 1 million Americans with this inherited condition remain undiagnosed, and substantial disparities exist with regard to racial/ethnic minorities (Black and African American people, Asian people) and gender (women). Cascade screening is an evidence-based practice of contacting and screening first-degree biological relatives of FH probands and improves timely FH diagnosis and reduces morbidity cost-effectively. Cascade screening programs have been successful in other countries where health systems play a key role in notification of relatives, but major implementation challenges limit uptake in the U.S. Pilot projects have identified barriers including regulatory constraints limiting health system outreach and difficulty contacting family members outside a given health system. In the U.S., cascade screening must involve the proband given regulatory constraints. Applying advances in behavioral economics has great potential to improve implementation of cascade screening via proband-mediated strategies. Led by MPIs with expertise in implementation science (Beidas), behavioral economics (Volpp), and FH (Rader), we will co-design, pilot, and test two patient-facing implementation strategies to increase reach of cascade screening with 300 probands within Penn Medicine. Our randomized controlled trial will test (a) a health system-mediated strategy using automated text messages, (b) a FH Foundation-mediated strategy using a navigator, and (c) the “usual care” approach to cascade screening. Both active strategies will be informed by behavioral economics. In the R61 phase, we will co-design health system- and FH Foundation-mediated implementation strategies using behavioral economics in partnership with the FH Foundation and key stakeholders from diverse backgrounds (Aim 1) and then pilot our strategies with 20 FH probands to ascertain feasibility, acceptability, and appropriateness (Aim 2). In the R33 phase, we will conduct a 3-arm hybrid Type 3 effectiveness-implementation RCT, and compare the effect of health system-mediated, FH Foundation-mediated, and usual care approaches on reach (proportion of probands who have at least one family member who completes screening), number of family members screened, number of family members diagnosed with FH, and proband LDL-C levels (Aim 1). We will use mixed methods to identify implementation strategy mechanisms focusing on health equity by oversampling populations that experience disparities (Aim 2). By testing sustainable and scalable implementation approaches, our study results will be poised to guide future wide-scale implementation of cascade screening for FH and other genetic conditions within and outside large health systems while also answering important questions related to equitable implementation. Successful strategies can be taken to scale nationally to save lives, in keeping with NHLBI Strategic Objective 6.

拟议的项目利用了我们与家族性高胆固醇血症（FH）的长期合作伙伴关系 非营利研究和倡导组织Foundation，以完善和测试两种有希望的方法 在患有FH的个体中实施级联筛查。尽管基于证据的FH诊断准则和 治疗，超过100万具有这种遗传状况的美国人仍未诊断，并且大量分布 存在种族/族裔少数民族（黑人和非裔美国人，亚洲人）和性别 （女性）。级联筛查是一种基于证据的接触和筛选一级生物学的实践 FH概率的亲属和改善及时的FH诊断，并降低发病率成本有效。级联 在卫生系统在通知中起关键作用的其他国家，筛查计划已经成功 亲戚，但主要实施挑战限制了美国飞行员项目的吸收，已经确定了障碍 包括监管限制限制卫生系统外展和困难与外面的家庭成员的联系 给定的卫生系统。在美国，级联筛选必须涉及给定监管限制的证据。 在行为经济学中应用进步有很大的潜力来改善级联筛查的实施 通过概率介导的策略。由MPI领导，具有实施科学专业知识（Beidas），行为 经济学（Volpp）和FH（RADER），我们将共同设计，试点和测试两个面向患者的实施 在宾夕法尼亚州医学中使用300个概率提高级联筛查覆盖范围的策略。我们的随机 对照试验将使用自动文本消息测试（a）卫生系统介导的策略，（b）A FH 基础介导的策略使用导航器，以及（c）级联筛查的“通常护理”方法。两个都 主动策略将由行为经济学告知。在R61阶段，我们将共同设计卫生系统 - FH基金会介导的实施策略使用行为经济学与FH合作 来自潜水员背景的基金会和主要利益相关者（AIM 1），然后以20 fh进行我们的策略 检验以确定可行性，可接受性和适当性（AIM 2）。在R33阶段，我们将进行 3臂混合动力3型有效性 - 实现RCT，并比较卫生系统介导的效果， FH基金会介导的和通常的护理方法（至少有一个的证据的比例 完成筛选的家庭成员，筛选的家庭成员人数，家庭成员人数 被诊断为FH和Proband LDL-C水平（AIM 1）。我们将使用混合方法来识别实现 通过过度采样的人群体验分布的人群（AIM 2），重点关注健康公平的战略机制。 通过测试可持续和可扩展的实施方法，我们的研究结果将被中毒以指导未来 大型FH和其他遗传状况的级联筛查大规模实施 卫生系统同时还回答与公平实施有关的重要问题。成功的 可以按照NHLBI的战略目标6进行策略以在全国范围内进行规模挽救生命。