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

项目摘要 拟议项目将提供重要信息，为制定和实施 采取干预措施，改善镰状细胞贫血儿童接受预防服务的情况。国家 指南强烈建议患有镰状细胞性贫血的儿童接受常规筛查， 预防性药物，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增加有关， 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。 药物治疗值得注意的是，造成预防服务质量差距的机制是 未知，限制了我们制定和实施有效干预措施的能力。本报告的总体目标 研究的目的是阐明这些机制，并确定优化预防性治疗的机会。 为患有镰状细胞性贫血的儿童提供服务，从而减少疾病负担并提高质量 生命拟议的研究直接影响以下AHRQ优先人群：儿童、种族和民族 少数民族、低收入患者和有特殊医疗需求的患者。因此，它与AHRQ的 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，我们将（1）确定医疗保健服务中的关键目标 系统，以及人口的主要亚群，通过这些干预措施可以改善对 为患有镰状细胞性贫血的儿童提供预防服务;（2）确定接受 预防性服务，（3）整合护理模式和依从性缺陷的定量结果 根据预防服务的障碍和促进因素的定性结果，确定干预目标， 最有可能改善预防服务接受情况的战略。混合方法包括 分析来自三个大型互补的、具有全国代表性的数据集的数据， 定性数据收集。这些数据集提供了一个新的机会，以提供基于人口的视角 关于镰状细胞性贫血儿童护理的国家数据以及关于处方做法的国家数据。定量 包括机器学习和时间依赖生存分析在内的方法将使我们能够描述 与接受预防服务相关的护理模式，以及提供者之间依从性的差异， 患者、护理人员和保险类型。与提供者团队、护理人员、 和患者将确定潜在的障碍和促进遵守每一项预防服务，以及 干预的机会。最后，定量分析与定性分析的可视化整合 通过联合展示的调查结果将提供有关哪些干预目标和 这些战略最有可能改善预防服务的接受情况，并最终降低 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.