Telemedicine for Pediatric Sickle Cell Patients in Medically Underserved Areas
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 24
- 试验地点
- 1
- 主要终点
- Measuring collaboration of primary care provider and subspecialty care provider.
研究概览
简要总结
The purpose of this study is to learn more about how the use of two different types of telemedicine (distance medical care) can address barriers to receiving comprehensive sickle cell care, and whether care can be improved. Aim 1: Adapt two telemedicine models (i.e., hub-and-spoke; direct-to-consumer) for use with children with SCD using caregiver input from our preliminary K12 work. Aim 2: Demonstrate the feasibility of the telemedicine models developed in Aim 1 as the models undergo successive stakeholder refinement during use in actual clinical care. Aim 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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Health Services Research
- 盲法
- None
入排标准
- 年龄范围
- 16 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Caregivers must be 18 years or older, who have children between 0 to 21 years old with a diagnosis of Sickle Cell Disease and receive care at the Riley Hospital for Children Comprehensive Sickle Cell Disease clinic.
- •Adolescent patients 16 years and older are also able to participate in interviews/surveys.
- •The family must be willing to receive their care using the telemedicine model available to them based on the location of their primary residence.
- •TeleSCD model participants must live within 1 hour of the pre-identified telemedicine sites, while VirtualSCD model participants must live within the city limits of the pre-identified area.
排除标准
- •If a patient receives chronic transfusion therapy, they will not be eligible to participate, as our telemedicine models will not support this.
研究组 & 干预措施
Hub and Spoke
干预措施: Types of Telemedicine Delivery Models (Other)
Direct to Consumer
干预措施: Types of Telemedicine Delivery Models (Other)
结局指标
主要结局
Measuring collaboration of primary care provider and subspecialty care provider.
时间窗: 1 year
Documentation of Primary Care Provider communication of visits in the electronic medical record at least 70% of the time.
Measuring healthcare utilization pre and post telemedicine participation.
时间窗: 1 year
Will determine the frequency of 1) vasoocclusive pain episode; 2) acute chest syndrome; 3) Emergency department visits; 4) hospitalizations. This data will be collected through chart abstraction from Electronic Medical Record one year prior to study entry and one year on study.
Caregiver feedback
时间窗: 1 year
Telemedicine satisfaction survey (TESS) - administered to caregivers following each telemedicine visit. 0-5 Likert scale
Measuring adherence to appointment in sickle cell care.
时间窗: 1 year
Failed appointments in Electronic Medical Record - no more than one failed appointment during pilot year.
Measuring adherence to lab draws in sickle cell care.
时间窗: 6 months
Adherence to lab draws - a minimum of one complete blood count per six months.
Provider Feedback
时间窗: 1 year
Telemedicine Acceptance Questionnaire (TAQ) - will be given to all providers participating in telemedicine visits after every telemedicine visit. 0-5 Likert scale
次要结局
未报告次要终点
研究者
Seethal Jacob, MD, MS
Assistant Professor of Pediatrics
Indiana University