Understanding and Addressing the Social Determinants of Health for Families of Children with Sickle Cell Anemia within Pediatric Hematology

项目摘要 健康的社会决定因素（SDoH）-人们出生，成长，工作，生活和年龄的条件-是 健康和健康差距的主要驱动因素。具有医学复杂性的儿童特别危险，因为他们 高医疗需求和利用率。虽然美国儿科学会和付款人，如 医疗补助和医疗保险服务中心现在建议医疗提供者在 访问，研究尚未证明SDoH筛查和转诊干预对改善 儿童健康，并未能探索这种干预措施可以改善的潜在机制 健康成果。镰状细胞性贫血（SCA）儿童是研究 考虑到这一人口中普遍存在的贫困和未满足的物质需求， 该病的发病率和死亡率很高。该提案涉及及时的临床和政策相关 研究差距：（1）在两个门诊儿科血液学诊所实施SDoH干预， 收集初步数据，以评估其对儿童健康的影响;（2）表征潜在的 解决SDoH可能导致改善健康结果的机制。我们的团队已经开发了， 测试并实施了SDOH干预（WE CARE），该干预依赖于现有的临床流程来筛选 为未得到满足的物质需求，并将父母转介到社区服务;功效数据表明其积极作用 对父母获得社区资源的影响。我们现在建议进行一项务实的试验性集群RCT 检查在四个血液科诊所中的两个实施WE CARE作为护理标准。到 初步检查结果，我们将招募并跟踪100名SCA儿童的父母（每个研究中心25名）， 为期一年，以探讨如何在提供医疗服务的过程中解决未满足的社会需求， 提高医疗保健利用率和健康结果。鉴于应用现有理论的局限性， 对于文化多样性人群（如SCA人群），我们还将采用混合方法 描述SDoH如何影响疾病管理过程的方法。我们的具体目标是： (1)在两个儿科血液学诊所实施WE CARE，以现场测试关键研究后勤工作， 了解实施的促进因素和障碍，并加速其采用;（2）获得人口- 研究参数的具体经验估计，以计划WE CARE的大规模多中心集群RCT， 肯定会评估其对改善SCA儿童健康结果的影响;以及（3）质量 评估将SDoH干预措施与改善健康结果联系起来的可能机制。这项建议是 创新，因为它挑战了目前SCA儿童的临床实践和研究范式。它 对儿童健康政策具有重大影响，是可能改变儿童健康服务提供方式的关键一步。 医疗复杂儿童的医疗保健。

PROJECT SUMMARY Social determinants of health (SDoH)–the conditions in which people are born, grow, work, live, and age–are key drivers of health and health disparities. Children with medical complexity are particularly at-risk given their high healthcare need and utilization. Although the American Academy of Pediatrics and payers such as the Centers for Medicaid and Medicare Services are now recommending medical providers screen for SDoH at visits, studies have not yet demonstrated the impact of SDoH screening and referral interventions on improving child health and have fallen short of exploring potential mechanisms by which such interventions could improve health outcomes. Children with sickle cell anemia (SCA) are an ideal population in which to study the impact of SDoH interventions given the high prevalence of poverty and unmet material needs among this population and the disease’s significant morbidity and mortality. This proposal addresses a timely clinically- and policy-relevant research gap by: (1) implementing a SDoH intervention in two outpatient pediatric hematology clinics and gathering preliminary data to assess its impact on child health; and (2) characterizing the potential mechanisms by which addressing SDoH may lead to improved health outcomes. Our team has developed, tested, and implemented a SDOH intervention (WE CARE) which relies on existing clinical processes to screen for unmet material needs and refer parents to community services; efficacy data demonstrates its positive impact on parental receipt of community resources. We now propose conducting a pragmatic pilot cluster RCT to examine the implementation of WE CARE as standard of care in two of the four hematology clinics. To preliminarily examine outcomes, we will recruit and follow 100 parents of children with SCA (25 per site) for one year in order to explore how addressing unmet social needs within the delivery of medical care may improve healthcare utilization and health outcomes. Given the limitations of applying existing theoretical frameworks to culturally diverse populations such as those with SCA, we will also employ a mixed methods approach to characterizing how SDoH influences disease management processes. Our specific aims are to: (1) Implement WE CARE in two pediatric hematology clinics in order to field test key study logistics and understand the facilitators and barriers to implementation and accelerate its adoption; (2) Obtain population- specific empirical estimates of study parameters to plan a large-scale multi-site cluster RCT of WE CARE that will definitely assess its impact on improving health outcomes for children with SCA; and (3) Qualitatively assess possible mechanisms linking SDoH interventions to improved health outcomes. This proposal is innovative because it challenges the current clinical practice and research paradigms for children with SCA. It has significant implications for child health policy and is a critical step in potentially transforming the delivery of healthcare for medically complex children.