Telemedicine for Pediatric Sickle Cell Care in Medically Underserved Communities

镰状细胞病（SCD）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，但这种护理不是 很容易进入。据估计，只有不到70%的SCD儿童得到全面护理， 20%的人经历了有效的护理协调。此外，综合性镰状细胞中心是最 通常位于主要的大都市地区，使农村家庭或医疗服务不足的家庭很难接受 获得全面护理的地区。远程医疗，利用现代技术远程提供医疗护理 信息技术是解决SCD患者所经历障碍的潜在策略 生活在农村和医疗服务不足的地区。研究表明，远程医疗不仅 安全有效，但目前的SARS-CoV2大流行表明，它可以增加当地获得 专科护理我在准备这次重新提交的初步工作证明了可行性 以及印第安纳州农村地区SCD护理的远程医疗可接受性（AHRQ K12 HS 026390）。我的长- 长期目标是改善SCD儿童获得高质量护理的机会和坚持。的目的 应用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社区的SCD儿童， 服务我们将使用从初步K12工作中收集的结果来调整、完善和试点 现有的中心辐射模式和直接面向消费者的模式。我假设远程医疗 模型将是提供循证综合儿科SCD护理的可行方法， 农村或医疗服务不足地区的患者，护理人员和患者的障碍减少 通过直接面向消费者的模式来护理和改善以护理者/患者为中心的结果。具体 本提案的研究目标是：（1）调整两种用于SCD儿童的远程医疗模式， 从我们的初步K12工作的护理人员输入;（2）证明远程医疗模型的可行性 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）以下过程，在前/后研究中评价目标2中的细化模型的有效性： 护理措施，（B）提供者满意度，（c）以护理者/患者为中心的结果，以及（d）临床结果 和医疗保健利用率。我将申请R21/R03资助，以扩大模型， 根据每个社区在不同环境中的表现，在全州范围内进行评估。我也申请R01 通过随机对照试验，评估其对卫生保健利用、疾病 结果，以及以护理者/患者为中心的结果。这项工作可以用来评估 远程医疗的问题，如羟基脲的使用和遵守。拟议中的研究也将帮助我 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.