The LETS Study: A Longitudinal Evaluation of Transition Services
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Purpose
This project will describe and evaluate the impact of a unique partnership model designed to coordinate transfer of care by formally linking pediatric and adult heath care services. The experiences of young people receiving this model of care will be compared and contrasted against the experiences of young people receiving the current standard of care. Young people with a diagnosis of CP, ABIc, and SB will be followed during the transition period. Preparation for transition, health care, and transfer of care service delivery will be detailed in a process evaluation. An outcome evaluation will measure the ability of the two models of service to enable youth to maintain continuity within the health care system after transitioning from pediatric to adult care. Secondary outcomes, including how health, well-being, social participation, transition readiness, and health care utilization are affected will also be explored.
| Condition |
|---|
|
Cerebral Palsy Brain Injuries Spinal Dysraphism |
| Study Type: | Observational |
| Study Design: | Observational Model: Cohort Time Perspective: Prospective |
| Official Title: | The LETS Study: A Longitudinal Evaluation of Transition Services |
- maintenance of continuous care [ Time Frame: September 2009 - September 2013 ] [ Designated as safety issue: No ]
- patterns of health care utilization, health, well-being, social participation and transition readiness [ Time Frame: September 2009 - September 2013 ] [ Designated as safety issue: No ]
| Estimated Enrollment: | 331 |
| Study Start Date: | September 2009 |
| Estimated Study Completion Date: | September 2013 |
| Estimated Primary Completion Date: | September 2013 (Final data collection date for primary outcome measure) |
| Groups/Cohorts |
|---|
|
Prospective LIFEspan
LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
|
|
Prospective Non-LIFEspan
LIFEspan youths with Spina Bifida
|
|
Retrospective Non-LIFEspan
Non-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
|
| LIFEspan Staff |
|
Caregivers
Parents of participating youths
|
Detailed Description:
Due to advances in medical treatment, most children with disabilities such as cerebral palsy or acquired brain injury can expect to live normal lifespans. As children, these individuals are cared for by expert healthcare providers working in coordinated teams in specialized pediatric settings. As these children reach adulthood, the availability of services and expertise drops dramatically because the adult health care system has not evolved to meet their specialized needs. In addition, transitioning from pediatric to adult services is often very difficult and stressful. Young people and their families must leave familiar healthcare settings and providers, and secure care in unfamiliar adult health care environments.
This proposed project will describe and evaluate the impact of a unique partnership model designed to coordinate transfer of care by formally linking pediatric and adult health care services. The LIFEspan model aims to (a) prepare youth and their families to adapt to adult healthcare provision, (b) provide a coordinated transfer process from pediatric to adult providers, and (c) establish sustainable access and appropriate adult care. The project will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care in a process evaluation. An outcome evaluation will measure the effectiveness of the model in terms of its abilities to enable youth to maintain continuity within the health care system after transitioning from pediatric to adult care. Secondary outcomes, including how health, well-being, social participation, transition readiness, and health care utilization are affected by the LIFEspan model, will also be explored.
Eligibility| Ages Eligible for Study: | 16 Years to 23 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
Youth and young adult clients or recent graduates of Bloorview Kids Rehab who have either participated in LIFEspan transition services or have transitioned to adult healthcare without LIFEspan participation
Inclusion Criteria:
- Prospective groups: 16th Birthday between September 2008 - August 2009, diagnosis of cerebral palsy or acquired brain injury, spina bifida
- Retrospective group: 16th Birthday between September 2002 - August 2003, diagnosis of cerebral palsy or acquired brain injury
Exclusion Criteria:
- N/A
Contacts and Locations| Canada, Ontario | |
| Holland Bloorview Kids Rehabilitation Hospital | |
| Toronto, Ontario, Canada, M4G 1R8 | |
| Toronto Rehabilitation Institute | |
| Toronto, Ontario, Canada | |
| Principal Investigator: | Colin Macarthur, PhD | The Hospital for Sick Children |
| Principal Investigator: | Mark Bayley, MD | Toronto Rehab Institute |
More Information
Publications:
| Responsible Party: | Colin Macarthur, Associate Chief, Clinical Research, The Hospital for Sick Children |
| ClinicalTrials.gov Identifier: | NCT00975338 History of Changes |
| Other Study ID Numbers: | 2008-ABI-LSMODEL-706 |
| Study First Received: | September 10, 2009 |
| Last Updated: | July 25, 2012 |
| Health Authority: | Canada: Ethics Review Committee |
Keywords provided by Holland Bloorview Kids Rehabilitation Hospital:
|
health care transition, young adults, rehabilitation |
Additional relevant MeSH terms:
|
Spinal Dysraphism Cerebral Palsy Neural Tube Defects Brain Injuries Brain Damage, Chronic Brain Diseases Central Nervous System Diseases |
Nervous System Diseases Nervous System Malformations Congenital Abnormalities Craniocerebral Trauma Trauma, Nervous System Wounds and Injuries |
ClinicalTrials.gov processed this record on May 19, 2013