Telemedicine for Pediatric Sickle Cell Care in Medically Underserved Communities

镰状细胞病是最常见的遗传性血液病。研究表明， 全面的医疗护理可以减少与SCD相关的不良后果，但这种护理并非如此 轻松访问。据估计，只有不到70%的SCD儿童得到了全面的护理，而且只有 20%的人经历了有效的护理协调。此外，综合性的镰状细胞中心是最 通常位于主要大都市地区，使农村家庭或医疗服务不足的家庭难以获得 可获得全面护理的领域。远程医疗，使用现代医疗技术远程提供医疗服务 信息技术是解决SCD患者所经历的障碍的潜在策略 生活在农村和医疗服务不足的地区。研究不仅证明了远程医疗是 安全和有效，但目前的SARS-CoV2大流行表明，它可以如何增加当地获得 专科护理。我为这次重新提交所做的前期准备工作证明了这一可行性 以及印第安纳州农村地区远程医疗治疗SCD的可接受性(AHRQ K12 HS026390)。我的龙- 学期目标是改善SCD儿童获得和坚持高质量护理的机会。这样做的目的是 应用程序是调查各种远程医疗模式的使用，以提供全面的护理 农村和医疗服务不足的社区中患有SCD的儿童没有随时获得专门的 服务。我们将使用从K12初步工作中收集的结果来适应、改进和试行 现有的轴辐式模式和直接面向消费者的模式。我假设远程医疗和 模型将是提供循证全面的儿科SCD护理的可行手段 农村或医疗服务不足地区的患者，照顾者和患者的障碍减少 通过直接面向消费者的模式护理和改善以照顾者/患者为中心的结果。具体的 这项建议的研究目标是：(1)调整两种远程医疗模式，用于SCD儿童使用 来自我们初步K12工作的护理者输入；(2)演示远程医疗模式的可行性 在目标1中开发，因为它们在实际临床护理中使用期间经历了连续的利益相关者改进；(3) 通过评估(A)过程，评估来自目标2的改进模型在前后研究中的有效性 护理措施，(B)提供者满意度，(C)以照顾者/患者为中心的结果，和(D)临床结果 和医疗保健利用率。我将申请R21/R03资金，将型号扩大到更多 全州范围内的社区，基于每个社区在不同环境中的表现。我也会申请R01 通过随机对照试验评估它们对卫生保健利用、疾病的影响的资金 结果，以及以照顾者/患者为中心的结果。这项工作可以用来评估 关于羟基尿素的使用和依从性等问题的远程医疗。拟议的研究也将对我有所帮助 培养以患者为中心的研究方法以及改进和实施科学的技能。

Sickle cell disease (SCD) is the most common inherited hematologic disease. Studies have shown that comprehensive medical care can decrease adverse outcomes associated with SCD, but such care is not easily accessed. It is estimated that less than 70% of children with SCD receive comprehensive care, and only 20% experience effective care coordination. Additionally, comprehensive sickle cell centers are most commonly located in major metropolitan areas, making it difficult for families in rural or medically underserved areas to access comprehensive care. Telemedicine, the remote provision of medical care using modern information technology, is a potential strategy to address the barriers experienced by patients with SCD living in rural and medically underserved areas. Not only have studies demonstrated that telemedicine is safe and effective, but the current SARS-CoV2 pandemic has shown how it can increase local access to subspecialty care. My preliminary work in preparation for this resubmission demonstrated the feasibility and acceptability of telemedicine for SCD care in a rural part of Indiana (AHRQ K12 HS026390). My long- term goal is to improve access and adherence to quality care for children with SCD. The objective of this application is to investigate the use of various telemedicine models to provide comprehensive care to children with SCD in rural and medically underserved communities without ready access to specialized services. We will use the results gathered from our preliminary K12 work to adapt, refine, and pilot an existing hub-and-spoke model and a direct-to-consumer model. I hypothesize that both telemedicine models will be a feasible means of providing evidence-based comprehensive pediatric SCD care to patients in rural or medically underserved areas, with caregivers and patients having decreased barriers to care and improved caregiver/patient-centered outcomes with the direct-to-consumer model. The specific research aims of this proposal are: (1) Adapt two telemedicine models for use with children with SCD using caregiver input from our preliminary K12 work; (2) Demonstrate the feasibility of the telemedicine models developed in Aim 1 as they undergo successive stakeholder refinement during use in actual clinical care; (3) Evaluate the effectiveness of the refined models from Aim 2 in a pre/post study by assessing (a) process of care measures, (b) provider satisfaction, (c) caregiver/patient-centered outcomes, and (d) clinical outcomes and healthcare utilization. I will apply for R21/R03 funding to scale-up the models to additional communities statewide based on how each performs in different environments. I will also apply for R01 funding to assess, through a randomized controlled trial, their effect on health care utilization, disease outcomes, and caregiver/patient-centered outcomes. This work can be adapted to evaluate the impact of telemedicine on issues like hydroxyurea use and adherence. The proposed research will also help me develop skills in patient-centered research methods as well as improvement and implementation science.