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NCT Number: NCT05849285

Evaluation of the Transitional and Lifelong Care Program

The population cared for in the Transitional and Lifelong Care (TLC) clinic is youth and adults with childhood-onset disability, of which the large majority are adults with brain-based, neurodevelopmental conditions such as cerebral palsy, spina bifida and developmental disability. The TLC program was created to address the health inequities that have long existed for this population because of the gaps in care they experience once they transition from pediatric healthcare services to the adult healthcare sector. The TLC program offers coordinated and comprehensive management of co-occurring mental, social and physical health conditions for this group of adults with neurodiverse conditions. The proposed study will provide much needed evaluation of the TLC model as an intervention to provide transitional and lifelong care that reduces the barriers experienced because of the undefined clinic path - potentially more appropriately referred to as a "cliff" by a Freeman et al., (2015) - for these individuals. With appropriate evidence of effectiveness, scaling of the TLC program to other Ontario Health regions and more widely across Canada would improve access healthcare providers who are knowledgeable and competent in the management of physical and mental health conditions for adults with neurodiverse conditions as well as service integration and coordination between social and health sectors. The TLC clinic was co-designed with adults with neurodiverse conditions and health care providers in 2014 and represents a significant and sustainable change in the way healthcare has been delivered for this population in the Ontario Health West region over the last 7 years. More than 750 people have accessed coordinated and comprehensive care from Physiatrists, a Nurse Practitioner, Social Worker, Physiotherapist, Occupational Therapist, Speech Language Pathologist, Registered Dietitian and Rehabilitation Therapist in the TLC program since it began, documenting the effectiveness of this care has the power to re-shape care received for adults with neurodiverse conditions that onset in childhood in Canada.

Recruiting

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Key information

Age range

21 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Parkwood Institute

London, Ontario, Canada

Location status: Recruiting

Location contact

Caitlin Cassidy, MD

CONTACT

[email protected]

Josh Wiener, MSc

CONTACT

[email protected]

Who can participate

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

Inclusion criteria

Each participant dyad will consist of one person, of either sex and gender, who is over the age of 21 years with a childhood-onset disability, and the primary caregiver (based on contact hours) or support person, of either sex and gender, involved in their care. In cases where the patient participant is independent with care, a spouse or family member may still participate in the caregiver portion of the study.

  • Patient participants will have continuously resided in Ontario during the years of 2015 to 2020 to facilitate full data retrieval from the administrative dataset.
  • Healthcare providers, of any discipline, who provide care to adults with childhood-onset conditions in the TLC program.

Exclusion criteria

Patient participants will be ineligible if they are in a phase of deterioration associated with a progressive health condition identified either personally or by the caregiver participant.

Treatment and study plan

TLC Clinic

Other

Patients of the TLC clinic - receive coordinated multidisciplinary and specialized care from a team

Primary outcomes

  1. Patient Satisfaction

    Time frame: Year 1

    MPOC-A (Measure of Processes of Care - Adults) Each domain score, ranging from 0.0 to 7.0, is computed by averaging the ratings for the items of that domain, higher scores represent better outcomes

Secondary outcomes

  1. Health Related Quality of Life (General)

    Time frame: Year 1

    EQ5D5L The five levels in each dimension are worded as (1) 'not /no problems', (2) 'slight problems', (3) 'moderate problems', (4) 'severe problems', and (5) 'unable to' (mobility, self-care, usual activities), 'extreme' (pain/depression), or 'extremely' (anxiety/depression). The descriptive system describes 3125 (=5⁵) potential health states.

  2. Health Related Quality of Life (WHO)

    Time frame: Year 1

    WHOQOL-BREF (World Health Organization Quality of Life - Brief) Lowest and highest possible scores to zero and 100, respectively. Higher scores represent better outcomes

  3. Caregiver Burden

    Time frame: Year 1

    BSFC (Burden Scale for Family Caregivers). Minimum score is 0, maximum score is 84, higher scores represent worse outcome (more burden).

  4. Perceived Support of Healthcare Providers

    Time frame: Year 1

    MPOC-SP (Measure of Processes of Care - Service Providers). Each domain score, ranging from 0.0 to 7.0, is computed by averaging the ratings for the items of that domain, higher scores represent better outcomes

  5. Economic Analysis

    Time frame: Year 2

    Unit Costs of healthcare used

Study contacts

Contact information is provided by the study sponsor or research team.

Josh Wiener, MSc

CONTACT

[email protected]

Laura K Brunton, PhD

CONTACT

[email protected]

15196612111 ext. 81501

Sponsors and collaborators

Lead sponsor

Western University, Canada

Other

Registry information

Official study title

Evaluating a Model of Transitional and Lifelong Care for Adults With Childhood-Onset Disabilities

Important dates

Study start
2024
Primary completion
2026
Study completion
2027
First posted
May 8, 2023
Registry last updated
Feb 27, 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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