Evaluation of the Transitional and Lifelong Care Program

MI-összefoglaló

A vizsgálat saját részvételi feltételeiből. Gép olvasta ki az oldalon álló regiszterszövegből, ezért tévedhet. Hogy ki vehet részt, azt a lenti regiszterszöveg és a vizsgálat csapata dönti el.

The trial is looking for adults over 21 years with a disability that began in childhood, such as cerebral palsy, spina bifida or developmental disability, and their main caregiver or support person. Healthcare providers who work in the TLC program can also join.

Életkor

Patients must be over 21 years old.

Nem

All sexes and genders can join.

A betegség stádiuma

A disability that began in childhood, such as cerebral palsy, spina bifida or developmental disability.

Korábbi kezelés

Some patients get care in the TLC program. Others are adults with the same conditions who are not TLC patients.

A részvétel fő kizáró okai

• Patients whose health is getting worse because of a condition that keeps progressing, as noted by the patient or the caregiver.
• Patients who did not live in Ontario the whole time from 2015 to 2020.

A regiszter feltételei, szó szerint

Mit akar kideríteni a vizsgálat

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.

A vizsgálat 5 csoportja

• TLC Patient

  Patients of the TLC program with CP/SB/DD

  Kezelés: 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

  Kezelés: 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

  Kezelés: TLC Clinic