Opportunities to optimize the receipt of preventive services among children with sickle cell anemia: A Mixed Methods Approach

项目总结 拟议项目将提供关键信息，为制定和实施 改善镰状细胞性贫血儿童接受预防性服务的干预措施。全国 指南强烈建议患有镰状细胞性贫血的儿童接受常规筛查，并提供 预防药物，以减少严重并发症的风险，包括感染、中风和疼痛 危机。尽管这些并发症与卫生服务利用率和成本的增加有关，而且 生活质量下降，只有40%的儿童接受常规筛查，不到20%的儿童接受预防性筛查 药物。值得注意的是，在接受预防性服务方面造成质量差距的机制是 未知，限制了我们制定和实施有效干预措施的能力。这样做的总体目标是 研究旨在阐明这些机制，并确定机会，以优化预防措施的接收 为镰状细胞性贫血儿童提供服务，从而减轻疾病负担，提高质量 生活的一部分。拟议的研究直接影响到以下AHRQ优先人口：儿童、种族和族裔 少数族裔、低收入患者和有特殊医疗需求的人。因此，它与AHRQ的 其使命是提高向弱势群体提供保健服务的效率和质量。 使用混合方法方法，我们将(1)确定医疗保健提供中的关键目标 系统以及人口的关键亚群，通过这些群体的干预可以改善接受 为患有镰状细胞性贫血的儿童提供预防性服务；(2)找出障碍和促进接受的因素 预防性服务，以及(3)整合护理模式和依从性缺陷的量化结果 利用预防性服务的障碍和促进者的定性调查结果，确定干预目标和 最有可能改善预防性服务接受情况的战略。混合方法方法包括 分析来自三个具有全国代表性的互补性大型数据集的数据，并结合主要数据 定性数据收集。数据集提供了一个新的机会来提供基于人口的视角 关于镰状细胞性贫血儿童的护理，以及关于处方做法的国家数据。量化 方法，包括机器学习和时间依赖生存分析，将使我们能够表征 与接受预防性服务相关的护理模式，以及不同提供者遵守情况的差异， 患者、照顾者和保险类型。对提供者团队、照顾者、 患者将确定遵守每项预防服务的潜在障碍和促进者，以及 干预的机会。最后，将定性与定量的直观结合起来 通过联合展示的研究结果将提供有关哪些干预目标和 战略最有可能改善预防性服务的接受情况，并最终减少 患有镰状细胞性贫血的儿童。

PROJECT SUMMARY The proposed project will provide critical information to inform the development and implementation of interventions to improve the receipt of preventive services among children with sickle cell anemia. National guidelines strongly recommend that children with sickle cell anemia receive routine screenings and be offered preventive medications to reduce the risk of serious complications including infections, strokes, and pain crises. Although these complications are associated with increased health services utilization and cost, and reduced quality of life, only 40% of children receive routine screenings and less than 20% receive preventive medications. Significantly, the mechanisms driving quality gaps in the receipt of preventive services are unknown, limiting our ability to develop and implement impactful interventions. The overall objective of this study is to shed light on these mechanisms and identify opportunities to optimize receipt of preventive services among children with sickle cell anemia, thus reducing disease burden and improving quality of life. The proposed study directly impacts the following AHRQ priority populations: children, racial and ethnic minorities, low-income patients, and those with special healthcare needs. As such, it aligns with AHRQ’s mission to improve efficiency and quality of health care delivery for vulnerable populations. Using a mixed methods approach, we will (1) identify critical targets within the healthcare delivery system, as well as key subgroups of the population, through which intervention can improve the receipt of preventive services for children with sickle cell anemia; (2) identify barriers to and facilitators of receipt of preventive services, and (3) integrate the quantitative findings of patterns of care and adherence deficiencies with the qualitative findings of barriers and facilitators to preventive services to identify intervention targets and strategies that are most likely to improve receipt of preventive services. The mixed methods approach includes analyzing data from three large complementary, nationally representative datasets, combined with primary qualitative data collection. The datasets provide a novel opportunity to provide a population-based perspective on the care of children with sickle cell anemia, as well as national data on prescribing practices. Quantitative methods, including machine learning and time-dependent survival analysis, will enable us to characterize patterns of care associated with receipt of preventive services, as well variation in adherence across providers, patients, caregivers, and insurance type. Qualitative, key informant interviews with provider teams, caregivers, and patients will identify potential barriers to and facilitators of adherence to each preventive service, as well as opportunities for intervention. Finally, the visual integration of the quantitative analysis with the qualitative findings through a joint display will provide essential information regarding which intervention targets and strategies are most likely to improve receipt of preventive services and ultimately reduce morbidity among children with sickle cell anemia.