An observational study in Spina Bifida, Cerebral Palsy and Spinal Cord Injury, sponsored by Centre Hospitalier Universitaire de Saint Etienne. Completed at 1 site in France. Open to participants aged 15 Years and older. Per ClinicalTrials.gov, last updated 2026-07-16.
Sponsored by Centre Hospitalier Universitaire de Saint Etienne · Observational
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:
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.
142 studies on the registry are indexed under Spinal Dysraphism; 39 are open to participants now.
This study's enrollment of 128 is above the median of 105 across 48 observational studies indexed under Spinal Dysraphism.
Browse Spinal Dysraphism studies →Centre Hospitalier Universitaire de Saint Etienne is the lead sponsor of 597 studies on the registry; 127 are open to participants now.
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The study will be based on a cohort of patients treated in the pediatric physical medicine and rehabilitation department at Saint-Étienne University Hospital between 2012 and 2022.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
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
Other: Chart review · Behavioral: Semi-structured interview
Chart review of adults who had been followed in the pediatric PM\&R department and who should have already completed their transition to adult care.
The qualitative approach was designed to explore patient's related experience of the transition process, with a focus on how they perceived, interpreted, and navigated their journey from pediatric to adult care.
Number of follow-up following transfer of care.
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.
Time frame: One year after the last pediatric visit.
Number of follow-up following transfer of care.
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.
Time frame: Two years after the last pediatric visit.
Key Themes and Narratives (semi-structured interviews)
The identification and detailed description of key themes and patterns emerging from the semi-structured interviews. This will involve a rigorous thematic analysis of young adults' narratives, capturing their lived experiences, perceptions, and emotional responses during the transition from child-centered to adult-oriented healthcare. The analysis will illuminate the core elements of their transition journey, providing a rich understanding of their challenges, successes, and perspectives.
Time frame: At inclusion
The Transition Readiness Assessment Questionnaire (TRAQ)
It is a validated self-report tool designed to assess the preparedness of adolescents and young adults with chronic health conditions for the transition from pediatric to adult health care services . Scores are interpreted on a 5-point Likert scale (from 0 to 5), where higher scores reflect greater autonomy and readiness for transition.
Time frame: At inclusion
Polyhandicap quality of life questionnaire (PolyQol).
It is designed to assess the quality of life of individuals with polyhandicap. It covers key domains such as physical well-being, communication, emotional state, autonomy, and participation. Items are scored on a Likert-type scale (total score ranging from 20 to100), with higher scores reflecting better perceived quality of life
Time frame: At inclusion
Plan to share: No
No publications or documents are linked to this record.
This study is completed, as verified in Jul 2026. You cannot join it, but the record below documents what was studied.
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Centre Hospitalier Universitaire de Saint Etienne →