Patient-Provider Interventions to Improve Transition to Adult Care in SCD
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 78
- 试验地点
- 2
- 主要终点
- Change From Baseline on Disease Self-efficacy Measure at 6 Weeks
研究概览
简要总结
The purpose of the study is to develop patient-provider clinical support tools to improve clinical practice, patient self-management, and disease outcomes in sickle cell disease during transition to adult care. The investigators hypothesize that these clinical support tools (patient tool, provider tool, and patient/parent web-based portal) will be feasible, user friendly, and beneficial. The investigators hypothesize that participants will demonstrate better disease self-efficacy at the end of the 6 week intervention and maintain these gains during the follow-up period (up to 1 year post-intervention).
详细描述
The purpose of the study is to develop patient-provider clinical support tools to improve clinical practice, patient self-management, and disease outcomes in sickle cell disease during transition to adult care.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Treatment
- 盲法
- None
入排标准
- 年龄范围
- 13 Years 至 24 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Have sickle cell disease (SCD)
- •Between the ages of 13 and 24
- •Receive care at Cincinnati Children's Hospital Medical Center, University Hospital, University of Cincinnati Med Peds Practice, a practice in the Ohio Valley SCD Network, or another local provider
- •Parent/caregiver of a patient with SCD age 13-24 years
排除标准
- •Below age 13
- •Have significant health complication(s) that would interfere with completion of the intervention (by physician report)
- •Have significant cognitive or developmental disabilities (by parent or physician report) due to high demand on participants to understand questions
- •Are not a patient at Cincinnati Children's Hospital Medical Center, University Hospital, University of Cincinnati Med Peds Practice, a practice in the Ohio Valley SCD Network, or another local provider
- •Are not a parent/caregiver of a patient with SCD age 13-24 years
研究组 & 干预措施
Self-Management Group
Self-management intervention for Adolescents with SCD - 6 week self-management group
干预措施: Self-management intervention for Adolescents with SCD (Behavioral)
Patient Portal
Patient Portal Intervention for Adolescents with SCD - 6 week individual patient portal intervention
干预措施: Patient Portal Intervention for Adolescents with SCD (Behavioral)
结局指标
主要结局
Change From Baseline on Disease Self-efficacy Measure at 6 Weeks
时间窗: baseline, 6 weeks (post-intervention)
Name of Measure: Sickle Cell Self-Efficacy Scale (SCSES). Construct: sickle cell self-efficacy (disease specific self-efficacy) 9 item measure of sickle cell disease self-efficacy (likert scale from 1 \[not at all sure\] to 5 \[very sure\]) developed by Edwards (see References). Responses on items are summed to compute a total score. Minimum score: 9 Maximum score: 45 Higher scores represent higher sickle cell self-efficacy (better outcome).
次要结局
未报告次要终点