Cerebral Palsy, Developmental Disability, Spina Bifida
Conditions
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.
Interventions
OTHERTLC Clinic
Patients of the TLC clinic - receive coordinated multidisciplinary and specialized care from a team
Sponsors
Western University, Canada
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
21 Years to No maximum
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Patient Satisfaction | 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
| Measure | Time frame | Description |
|---|---|---|
| Health Related Quality of Life (General) | 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. |
| Health Related Quality of Life (WHO) | 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 |
| Caregiver Burden | Year 1 | BSFC (Burden Scale for Family Caregivers). Minimum score is 0, maximum score is 84, higher scores represent worse outcome (more burden). |
| Perceived Support of Healthcare Providers | 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 |
| Economic Analysis | Year 2 | Unit Costs of healthcare used |
Countries
Canada
Contacts
CONTACTLaura K Brunton, PhD
CONTACTJosh Wiener, MSc
PRINCIPAL_INVESTIGATORLaura K Brunton, PhD
Western University
Outcome results
None listed