Overview

This trial is active, not recruiting.

Conditions cerebral palsy, brain injuries, spinal dysraphism
Treatments lifespan, non-lifespan
Sponsor Shauna Kingsnorth
Collaborator Ontario Neurotrauma Foundation
Start date September 2009
End date June 2014
Trial size 331 participants
Trial identifier NCT00975338, 2008-ABI-LSMODEL-706

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 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.

United States No locations recruiting
Other Countries No locations recruiting

Study Design

Observational model cohort
Time perspective prospective
Arm
LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
lifespan LIFEspan model of linked transition care
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.
LIFEspan youths with Spina Bifida
non-lifespan
Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.
Non-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
non-lifespan
Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.
All staff affiliated with the LIFEspan model of linked transition care
lifespan LIFEspan model of linked transition care
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.
Parents of participating youths
lifespan LIFEspan model of linked transition care
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.

Primary Outcomes

Measure
maintenance of continuous care
time frame: September 2009 - September 2013

Secondary Outcomes

Measure
patterns of health care utilization, health, well-being, social participation and transition readiness
time frame: September 2009 - September 2013

Eligibility Criteria

Male or female participants from 16 years up to 23 years old.

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:

Additional Information

Official title The LETS Study: A Longitudinal Evaluation of Transition Services
Principal investigator Colin Macarthur, PhD
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.
Trial information was received from ClinicalTrials.gov and was last updated in July 2016.
Information provided to ClinicalTrials.gov by Holland Bloorview Kids Rehabilitation Hospital.