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

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.

Study Overview

• Status: Completed
• Conditions: Stroke; Cerebral Palsy; Spinal Cord Injury; Spina Bifida; Spastic Paraplegia
• Intervention / Treatment: Other: Chart review; Behavioral: Semi-structured interview

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.

• Study Type: Observational
• Enrollment (Actual): 128

Contacts and Locations

Study Locations

• France
  • Saint-Etienne, France, 42055
    • CHU de Saint-Etienne

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No

• 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.

Description

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,

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

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; 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.; Behavioral: Semi-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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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 Outcome Measures

Outcome Measure	Measure Description	Time Frame
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.	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	At inclusion
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.	Two years after the last pediatric visit.
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.	At inclusion

Collaborators and Investigators

• Sponsor: Centre Hospitalier Universitaire de Saint Etienne
• Investigators: Principal Investigator: Maria ZAKHEM, MD, CHU de Saint-Etienne

Study record dates

Study Major Dates

• Study Start (Actual): February 14, 2025
• Primary Completion (Actual): September 10, 2025
• Study Completion (Actual): September 10, 2025

Study Registration Dates

• First Submitted: July 10, 2026
• First Submitted That Met QC Criteria: July 10, 2026
• First Posted (Actual): July 15, 2026

Study Record Updates

• Last Update Posted (Actual): July 16, 2026
• Last Update Submitted That Met QC Criteria: July 15, 2026
• Last Verified: July 1, 2026

More Information

Terms related to this study

• Keywords: rehabilitation; disability; Transition to adult care; Adolescent care
• Additional Relevant MeSH Terms: Neurologic Manifestations; Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Vascular Diseases; Cardiovascular Diseases; Wounds and Injuries; Congenital Abnormalities; Trauma, Nervous System; Brain Damage, Chronic; Spinal Cord Diseases; Nervous System Malformations; Neural Tube Defects; Paralysis; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Pathological Conditions, Signs and Symptoms; Signs and Symptoms; Stroke; Cerebral Palsy; Spinal Cord Injuries; Spinal Dysraphism; Paraplegia
• Other Study ID Numbers: IRBN082025/CHUSTE

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No