The LETS Study: A Longitudinal Evaluation of Transition Services

Study Overview
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Brief Summary
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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 Cerebral Palsy (CP), Acquired Brain Injury in childhood (ABIc), and Spina Bifida (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.

Detailed Description
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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.

Official Title
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The LETS Study: A Longitudinal Evaluation of Transition Services

Conditions
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Cerebral Palsy, Brain Injuries, Spinal Dysraphism

Intervention / Treatment
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* Other: LIFEspan
* Other: Non-LIFEspan


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 16 Years
Maximum Age: 23 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Prospective LIFEspan<br>LIFEspan youths with Cerebral Palsy or Acquired Brain Injury | Other: LIFEspan<br>* Rehabilitation services provided by an inter-disciplinary team of health professionals addressing the transfer of care to adult services and emerging needs related to transition to adulthood. LIFEspan staff are cross-appointed to both a pediatric and an adult hospital through a formally linked model of care.<br>* Other names: LIFEspan model of linked transition care;|
| Prospective Non-LIFEspan<br>LIFEspan youths with Spina Bifida | Other: Non-LIFEspan<br>* Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.<br>|
| Retrospective Non-LIFEspan<br>Non-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury | Other: Non-LIFEspan<br>* Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.<br>|
| LIFEspan Staff<br>All staff affiliated with the LIFEspan model of linked transition care | Other: LIFEspan<br>* Rehabilitation services provided by an inter-disciplinary team of health professionals addressing the transfer of care to adult services and emerging needs related to transition to adulthood. LIFEspan staff are cross-appointed to both a pediatric and an adult hospital through a formally linked model of care.<br>* Other names: LIFEspan model of linked transition care;|
| Caregivers<br>Parents of participating youths | Other: LIFEspan<br>* Rehabilitation services provided by an inter-disciplinary team of health professionals addressing the transfer of care to adult services and emerging needs related to transition to adulthood. LIFEspan staff are cross-appointed to both a pediatric and an adult hospital through a formally linked model of care.<br>* Other names: LIFEspan model of linked transition care;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| maintenance of continuous care |  | September 2009 - September 2013 | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| patterns of health care utilization, health, well-being, social participation and transition readiness |  | September 2009 - September 2013 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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health care transition, young adults, rehabilitation