The LETS Study: A Longitudinal Evaluation of Transition Services

Completed

• Conditions: Spinal Dysraphism; Cerebral Palsy; Brain Injuries
• Interventions: Other: LIFEspan; Other: Non-LIFEspan

• Registration Number: NCT00975338
• Lead Sponsor: Holland Bloorview Kids Rehabilitation Hospital

Brief Summary

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

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.

Study Timeline

• Study Start: 2009-09
• Study First Submitted: 2009-09-10
• Study First Submitted QC: 2009-09-10
• Study First Posted: 2009-09-11
• Primary Completion: 2014-06
• Study Completion: 2016-07-12
• Status Verified: 2023-10
• Last Update Submitted: 2023-10-19
• Last Update Posted: 2023-10-23

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 149

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Caregivers	LIFEspan	Parents of participating youths
Prospective LIFEspan	LIFEspan	LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
Retrospective Non-LIFEspan	Non-LIFEspan	Non-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
LIFEspan Staff	LIFEspan	All staff affiliated with the LIFEspan model of linked transition care
Prospective Non-LIFEspan	Non-LIFEspan	LIFEspan youths with Spina Bifida

Primary Outcome Measures

Name	Time	Method
maintenance of continuous care	September 2009 - September 2013

Secondary Outcome Measures

Name	Time	Method
patterns of health care utilization, health, well-being, social participation and transition readiness	September 2009 - September 2013

Trial Locations

Locations (2)

Holland Bloorview Kids Rehabilitation Hospital; 🇨🇦 Toronto, Ontario, Canada

Toronto Rehabilitation Institute; 🇨🇦 Toronto, Ontario, Canada