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NCT Number: NCT07706517

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.

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Key information

Conditions

Spina Bifida Brain Damage, Chronic Brain Diseases Cardiovascular Diseases Central Nervous System Diseases Cerebral Palsy Cerebrovascular Disorders Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Nervous System Diseases Nervous System Malformations Neural Tube Defects Neurologic Manifestations Paralysis Paraplegia Pathological Conditions, Signs and Symptoms Signs and Symptoms Spastic Paraplegia Spinal Cord Diseases Spinal Cord Injuries Spinal Cord Injury Spinal Dysraphism Stroke Trauma, Nervous System Vascular Diseases Wounds and Injuries

Age range

15 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

CHU de Saint-Etienne

Saint-Etienne, 42055, France

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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,

Treatment and study plan

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.

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.

Primary outcomes

  1. Number of follow-up following transfer of care.

    Time frame: 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 outcomes

  1. Number of follow-up following transfer of care.

    Time frame: 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.

  2. Key Themes and Narratives (semi-structured interviews)

    Time frame: 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.

  3. The Transition Readiness Assessment Questionnaire (TRAQ)

    Time frame: 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.

  4. Polyhandicap quality of life questionnaire (PolyQol).

    Time frame: 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

Sponsors and collaborators

Lead sponsor

Centre Hospitalier Universitaire de Saint Etienne

Other

Registry information

Important dates

Study start
2025
Primary completion
2025
Study completion
2025
First posted
Jul 15, 2026
Registry last updated
Jul 16, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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