Integrating Nurse Champion Model for Group Reproductive Genetic Counseling forSickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation ScienceStudy

将镰状细胞血红蛋白病团体生殖遗传咨询的护士冠军模型纳入初级保健：一项试点实施科学研究

• 批准号: 10553408
• 负责人: Cheedy Jaja
• 金额: $ 20.52万
• 依托单位: UNIVERSITY OF SOUTH FLORIDA
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-03-15 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10553408
• 关键词: Integrating; Nurse; Champion; Model; Group

ABSTRACT: Sickle cell disease (SCD) is a significant contributor to child morbidity and mortality. In sub-Saharan Africa (SSA), 90% of the children born annually with SCD will die before their fifth birthday, often undiagnosed. To decrease the high birth incidence of SCD requires identifying at-risk individuals through carrier screening, genetic counseling, and informed reproductive decision-making. The professional genetic counseling workforce capacity is severely limited in SSA. Nurses, however, comprise the single largest category of available health workers in SSA. Therefore, upskilling of nurses to provide genetic counseling offers a logical alternative workforce solution. Our primary objective in this three-year R21 proposal is to assess the acceptability and feasibility of a multi- faceted, integrated Nurse Champion model to deliver genetic counseling and carrier screening for SCD. Our strategy is to use a type-2 hybrid implementation-effectiveness design to evaluate patient uptake of services and satisfaction, organizational readiness, provider acceptance, workflows, and resource use. Sierra Leone, a SCD endemic country and location of our current SCD research and clinical programs, presents an ideal study site. In this feasibility study, the aims include developing and assisting local hospitals in implementing the model, evaluating processes/determinants of model’s implementation, and evaluating the model’s acceptability and effects on provider and client outcomes. Using implementation science frameworks, our research team will iteratively engage key stakeholders to inform an intervention plan. The evidence-informed Nurse Champion platform will frame the implementation model and include pre-test counseling and nurse-administered genetic screening. Nurses will complete a comprehensive provider training program before implementing the model. Three specific aims undergird our study: (1) Assess barriers and facilitators to primary health center provision of genetic counseling with a nurse champion model; (2) Finalize an implementation plan for the intervention using Implementation Mapping and stakeholder input; and (3) pilot the nurse champion model in two primary health centers and evaluate determinants and implementation costs. We will describe developing and implementing the model using implementation science frameworks, field observations, qualitative interviews, and implementation mapping to identify barriers/enablers. The intervention will be evaluated qualitatively and quantitatively. A preliminary costing assessment will consider the nurses and research study financial outlays. This research's main outcome is expected to be a replicable and scalable implementation model that will foster genetic counseling and carrier screening for SCD. At the conclusion of this project, we expect to have a tested, scalable model for implementing and maintain genomic health service intervention for nurses in SSA that could be readily adapted to low-resource settings in the US, where there is a profound need for such approaches.

摘要： 镰状细胞病（SCD）是儿童发病率和死亡率的重要因素。在撒哈拉以南非洲， 每年出生的SCD儿童中有90%会在5岁生日前死亡，通常未被诊断。降低 SCD的高出生发病率需要通过携带者筛查、遗传学筛查、 咨询和知情的生殖决策。专业遗传咨询工作人员的能力 在SSA中受到严重限制。然而，护士是我国现有卫生工作者中最大的一类 特别探员因此，提高护士提供遗传咨询的技能提供了一个合乎逻辑的替代劳动力解决方案。 我们在这份为期三年的R21建议书中的主要目标是评估一个多年期的R21方案的可接受性和可行性， 多方面的综合护士冠军模式，为SCD提供遗传咨询和携带者筛查。我们 战略是使用2型混合实施有效性设计来评估患者接受服务的情况， 满意度、组织准备度、提供者接受度、工作流程和资源使用。塞拉利昂，a SCD 流行的国家和我们目前的SCD研究和临床计划的位置，提出了一个理想的研究地点。 在这项可行性研究中，目标包括开发和协助当地医院实施该模式， 评估模型实施的过程/决定因素，并评估模型的可接受性， 对供应商和客户结果的影响。使用实施科学框架，我们的研究团队将 迭代地让关键利益相关者参与，为干预计划提供信息。护士冠军（Nurse Champion） 平台将框架的实施模式，包括预测试咨询和护士管理的遗传 筛选护士将在实施该模式之前完成全面的供应商培训计划。 我们的研究有三个具体目标：（1）评估初级卫生中心提供 遗传咨询与护士冠军模式;（2）最终确定实施计划的干预， 实施规划和利益攸关方的投入;以及（3）在两个初级保健中心试行护士冠军模式 中心和评估决定因素和实施成本。我们将描述开发和实施 该模型使用实施科学框架，实地观察，定性访谈， 执行情况摸底，以确定障碍/推动因素。将对干预措施进行定性评价， 数量上。初步成本评估将考虑护士和研究的财务支出。 这项研究的主要成果预计将是一个可复制和可扩展的实施模式， 遗传咨询和SCD携带者筛查。在这个项目结束时，我们希望有一个测试， 可扩展的模型，用于实施和维持SSA护士的基因组健康服务干预， 容易适应美国的低资源环境，那里非常需要这种方法。