Evaluation of the Transitional and Lifelong Care Program

NCT05849285 | Recruiting

• 2 other identifiers: 122419184575
• Study Type: observational
• Target: 410
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Cerebral Palsy; Spina Bifida; Developmental Disability

Outcome Measures

Primary Outcomes (1)

• Patient Satisfaction

  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

  Year 1

Secondary Outcomes (5)

• Health Related Quality of Life (General)

  Year 1

• Health Related Quality of Life (WHO)

  Year 1

• Caregiver Burden

  Year 1

• Perceived Support of Healthcare Providers

  Year 1

• Economic Analysis

  Year 2

Study Arms (5)

TLC Patient

Patients of the TLC program with CP/SB/DD

Other: TLC Clinic

Control Patient

Adults with CP/SB/DD that are not patients of the TLC Program

TLC Caregiver

Caregiver of Patients of the TLC program with CP/SB/DD

Other: TLC Clinic

Control Caregiver

Caregiver of Adults with CP/SB/DD that are not patients of the TLC Program

Healthcare Providers

Healthcare Providers who care for patients in the TLC clinic

Other: TLC Clinic

Interventions

TLC Clinic OTHER

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

Healthcare Providers; TLC Caregiver; TLC Patient

Eligibility Criteria

• Age: 21 Years+
• Sex: all
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Participants will be categorized into two cohorts: 1) patients of the TLC program, 2) controls . Participant dyads will be formed that include the adult patient (and a caregiver, spouse, or support person that may be involved in the patient's care. TLC dyads will be recruited from the existing client base of the program and control dyads will be recruited from the Kitchener/Waterloo/Cambridge area of Ontario (and the surrounding rural areas).

You may qualify if:

• 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.

You may not qualify if:

• 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.

Sponsors & Collaborators

• Western University, Canada: lead

Study Sites (1)

Parkwood Institute

London, Ontario, Canada

RECRUITING

MeSH Terms

Conditions

Cerebral Palsy; Spinal Dysraphism; Developmental Disabilities

Condition Hierarchy (Ancestors)

Brain Damage, Chronic; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neural Tube Defects; Nervous System Malformations; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Laura K Brunton, PhD

  Western University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Laura K Brunton, PhD

CONTACT

15196612111; lbrunto3@uwo.ca

Josh Wiener, MSc

CONTACT

jwiener2@uwo.ca

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Study Record Dates

• First Submitted: April 25, 2023
• First Posted: May 8, 2023
• Study Start: January 3, 2024
• Primary Completion (Estimated): December 31, 2026
• Study Completion (Estimated): December 1, 2027
• Last Updated: February 27, 2026

Record last verified: 2026-02

Locations

CA (1)