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.
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.
Study Type
OBSERVATIONAL
Enrollment
128
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.
CHU de Saint-Etienne
Saint-Etienne, France
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
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