Learning Health for Pediatric Complex Care Integration (PCCI)
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- Change in parent health-related quality of life (HR-QOL), as measured by the PROMIS Global Health Survey
研究概览
简要总结
The study team will conduct a mixed methods evaluation of the implementation of an evidence-based clinical program -- the Pediatric Complex Care Integration (PCCI) program - for improvement of care integration for children and youth with special healthcare needs (CYSHCN) and children with medical complexity (CMC). The PCCI program is not a discrete intervention itself; rather it is a health system-initiated program that will be implemented as a new standard of care for eligible patients with the intention of improving quality of care, implemented by clinical teams within Duke Health.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Change in parent health-related quality of life (HR-QOL), as measured by the PROMIS Global Health Survey
时间窗: Baseline, 3 months, 6 months, 9 months, 12 months
The PROMIS Global Health Survey is a 10-item parent-reported survey that gathers parent perspectives on their own overall HR-QOL. Six of the 9 survey items use a 5-level Likert scale with 1=poor and 5=excellent; one of the 9 survey items uses a 5-level Likert scale with 1=not at all and 5=completely; one of the 9 survey items uses a 5-level Likert scale with 1=never and 5=always; one of the 9 survey items uses a 5-level Likert scale with 1=none and 5=very severe; and one of the 9 survey items uses a 0-10 scale (0=no pain; 10=worst pain imaginable).
Change in care fragmentation, as measured by the Pediatric Integrated Care Survey (PICS)
时间窗: Baseline, 6 months, 12 months
The PICS is a 20-item survey that gathers parents perspectives on the degree of care integration received by their child using a 6-level Likert scale (1=never; 6=always).
Change in child health-related quality of life (HR-QOL), as measured by the PROMIS (7+2) Parent Proxy Global Health Survey
时间窗: Baseline, 3 months, 6 months, 9 months, 12 months
The PROMIS (7+2) Pediatric Global Health Survey is a 9-item parent-reported survey that gathers parent perspectives on their child's overall HR-QOL. Four of the 9 survey items use a 5-level Likert scale with 1=poor and 5=excellent; three of the 9 survey items use a 5-level Likert scale with 1=never and 5=always; and three of the 9 survey items use a 5-level Likert scale with 1=never and 5=almost always.
Change in well-being, as measured by the Well-Being Index (WBI)
时间窗: Baseline, 3 months, 6 months, 12 months
The Well-Being Index is a 9-time clinical provider/staff-reported measure that gathers staff perceptions of their overall well-being at work. Seven of the 9 survey items use a dichotomous response (Yes/No) and two remaining items use 7-level Likert scale (1=very strongly disagree; 7=very strongly agree).
次要结局
- Change in caregiver self-management, as measured by the Parent-Patient Activation Measure (P-PAM)(Baseline, 3 months, 6 months, 12 months)
- Change in perceptions of barriers to care, as measured by the Barriers to Care Questionnaire (BCQ)(Baseline, 12 months)
- Acceptability, as measured by clinical staff survey(12 months)
- Change in perceptions of cultural distance, as measured by the Cultural Distance Scale (CDS)(Baseline, 12 months)
- Changes in caregiver self-efficacy, as measured by the New Generalized Self-Efficacy Scale (NGSE)(Baseline, 3 months, 6 months, 9 months, 12 months)
- Changes in perceptions of shared decision-making, as measured by the a sub-scale from the Interpersonal Processes of Care survey(3 months, 6 months, 9 months, 12 months)
- Feasibility, as measured by clinical staff survey(12 months)
- Appropriateness, as measured by clinical staff survey(12 months)