Assessing Transition Practices for Children With Disabilities: Pathways to a Successful Adulthood
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 128
- 试验地点
- 1
- 主要终点
- Absence of follow-up discontinuity following transfer of care.
研究概览
简要总结
Transition to adult care is a purposeful and structured movement of youth with complex disabilities from child centered to adult oriented services.
This complex and potentially challenging period requires careful planning.
The investigators aim to examine the transition practices in the University Hospital of Saint Etienne. The study employs a mixed methods approach, combining:
- A retrospective evaluation : Analyzing transition data over a 10-year period.
- A prospective qualitative study : Conducting semi-structured interviews with patients who have already transitioned within our clinic.
详细描述
The aim of this study is to assess how transition from pediatric to adult care is currently managed within a university hospital center. By examining existing practices and gathering the perspectives of young people and their families, the investigators sought to identify both the strengths of the current system and the areas where improvements are needed to ensure a smoother, more effective transition process.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Retrospective
入排标准
- 年龄范围
- 15 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •patients who had been diagnosed with conditions such as cerebral palsy, neonatal stroke, polyhandicap, spinal cord injury, spina bifida, or other genetic syndromes.
- •patients who had visited the pediatric rehabilitation department at least once between 2012 and 2022.
排除标准
- •neuromuscular disorders,
- •any cancer diagnoses,
- •autism spectrum disorders,
- •patients still in pediatric care,
研究组 & 干预措施
Transition to adulthood
All patients from pediatric Physical Medicine and Rehabilitation (PM&R) department database with at least one hospitalisation (day or week) from 2012 to 2022 over 15 years old
干预措施: Chart review (Other)
Transition to adulthood
All patients from pediatric Physical Medicine and Rehabilitation (PM&R) department database with at least one hospitalisation (day or week) from 2012 to 2022 over 15 years old
干预措施: Semi-structured interview (Behavioral)
结局指标
主要结局
Absence of follow-up discontinuity following transfer of care.
时间窗: One year after the last pediatric visit.
The absence of follow up discontinuity is based on the major indicator retained from the Suris et al Delphi study on key elements of a successful transition, which is "patient not lost to follow up". Thus by calculating the delay between the last pediatric visit and the first adult visit.
Number of follow-up following transfer of care.
时间窗: One year after the last pediatric visit.
The absence of follow up discontinuity is based on the major indicator retained from the Suris et al Delphi study on key elements of a successful transition, which is "patient not lost to follow up". Thus by calculating the delay between the last pediatric visit and the first adult visit.
次要结局
- Absence of follow-up discontinuity following transfer of care.(Two years after the last pediatric visit.)
- Key Themes and Narratives (semi-structured interviews)(At inclusion)
- Polyhandicap quality of life questionnaire (PolyQol).(At inclusion)
- The Transition Readiness Assessment Questionnaire (TRAQ)(At inclusion)
- Number of follow-up following transfer of care.(Two years after the last pediatric visit.)