Cerebral Palsy, Spastic Paraplegia, Spina Bifida, Spinal Cord Injury, Stroke
Conditions
Keywords
Transition to adult care, Adolescent care, disability, rehabilitation
Brief summary
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.
Detailed description
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.
Interventions
OTHERChart review
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.
BEHAVIORALSemi-structured interview
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.
Sponsors
Centre Hospitalier Universitaire de Saint Etienne
Study design
Observational model
COHORT
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
15 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* 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.
Exclusion criteria
* neuromuscular disorders, * any cancer diagnoses, * autism spectrum disorders, * patients still in pediatric care,
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of follow-up following transfer of care. | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Number of follow-up following transfer of care. | Two years 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. |
| Key Themes and Narratives (semi-structured interviews) | At inclusion | 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. |
| The Transition Readiness Assessment Questionnaire (TRAQ) | At inclusion | 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. |
| Polyhandicap quality of life questionnaire (PolyQol). | At inclusion | 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 |
Countries
France
Contacts
PRINCIPAL_INVESTIGATORMaria ZAKHEM, MD
CHU de Saint-Etienne
Outcome results
None listed