Assessing Transition Practices for Children With Disabilities: Pathways to a Successful Adulthood

NCT07706517 | Completed

• 1 other identifier: IRBN082025/CHUSTE
• Study Type: observational
• Target: 128
• Locations: 1 country
• Sites: 1

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.

Conditions

Spina Bifida; Cerebral Palsy; Spinal Cord Injury; Spastic Paraplegia; Stroke

Keywords

Transition to adult care; Adolescent care; disability; rehabilitation

Outcome Measures

Primary Outcomes (1)

• 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.

  One year after the last pediatric visit.

Secondary Outcomes (4)

• Number of follow-up following transfer of care.

  Two years after the last pediatric visit.

• Key Themes and Narratives (semi-structured interviews)

  At inclusion

• The Transition Readiness Assessment Questionnaire (TRAQ)

  At inclusion

• Polyhandicap quality of life questionnaire (PolyQol).

  At inclusion

Study Arms (1)

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

Other: Chart review; Behavioral: Semi-structured interview

Interventions

Chart review OTHER

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.

Transition to adulthood

Semi-structured interview BEHAVIORAL

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.

Transition to adulthood

Eligibility Criteria

• Age: 15 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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.

You may qualify if:

• 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.

You may not qualify if:

• neuromuscular disorders,
• any cancer diagnoses,
• autism spectrum disorders,
• patients still in pediatric care,

Sponsors & Collaborators

• Centre Hospitalier Universitaire de Saint Etienne: lead

Study Sites (1)

CHU de Saint-Etienne

Saint-Etienne, 42055, France

Location

MeSH Terms

Conditions

Spinal Dysraphism; Cerebral Palsy; Spinal Cord Injuries; Paraplegia; Stroke

Condition Hierarchy (Ancestors)

Neural Tube Defects; Nervous System Malformations; Nervous System Diseases; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Brain Damage, Chronic; Brain Diseases; Central Nervous System Diseases; Spinal Cord Diseases; Trauma, Nervous System; Wounds and Injuries; Paralysis; Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Cerebrovascular Disorders; Vascular Diseases; Cardiovascular Diseases

Study Officials

• Maria ZAKHEM, MD

  CHU de Saint-Etienne

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 10, 2026
• First Posted: July 15, 2026
• Study Start: February 14, 2025
• Primary Completion: September 10, 2025
• Study Completion: September 10, 2025
• Last Updated: July 16, 2026

Record last verified: 2026-07

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)