Evaluation of the Transitional and Lifelong Care Program

Study Overview
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Brief Summary
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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.

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

Conditions
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Cerebral Palsy, Spina Bifida, Developmental Disability

Intervention / Treatment
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* Other: TLC Clinic


Participation Criteria
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Eligibility Criteria
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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. 2. Patient participants will have continuously resided in Ontario during the years of 2015 to 2020 to facilitate full data retrieval from the administrative dataset. 3. 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.

Ages Eligible for Study
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Minimum Age: 21 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| TLC Patient<br>Patients of the TLC program with CP/SB/DD | Other: TLC Clinic<br>* Patients of the TLC clinic - receive coordinated multidisciplinary and specialized care from a team<br>|
| Control Patient<br>Adults with CP/SB/DD that are not patients of the TLC Program | |
| TLC Caregiver<br>Caregiver of Patients of the TLC program with CP/SB/DD | Other: TLC Clinic<br>* Patients of the TLC clinic - receive coordinated multidisciplinary and specialized care from a team<br>|
| Control Caregiver<br>Caregiver of Adults with CP/SB/DD that are not patients of the TLC Program | |
| Healthcare Providers<br>Healthcare Providers who care for patients in the TLC clinic | Other: TLC Clinic<br>* Patients of the TLC clinic - receive coordinated multidisciplinary and specialized care from a team<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Patient Satisfaction | MPOC-A | Year 1 | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Health Related Quality of Life | EQ5D5L | Year 1 | 
| Health Related Quality of Life | WHOQOL-BREF | Year 1 | 
| Caregiver Burden | BSFC | Year 1 | 
| Perceived Support of Healthcare Providers | MPOC-SP | Year 1 | 
| Economic Analysis | Unit Costs of healthcare used | Year 2 |