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Trial record 20 of 37 for:    "spina bifida"

The LETS Study: A Longitudinal Evaluation of Transition Services

This study is ongoing, but not recruiting participants.
Sponsor:
Collaborator:
Ontario Neurotrauma Foundation
Information provided by (Responsible Party):
Shauna Kingsnorth, Holland Bloorview Kids Rehabilitation Hospital
ClinicalTrials.gov Identifier:
NCT00975338
First received: September 10, 2009
Last updated: February 2, 2015
Last verified: February 2015
  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 Intervention
Cerebral Palsy
Brain Injuries
Spinal Dysraphism
Other: LIFEspan
Other: Non-LIFEspan

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Prospective
Official Title: The LETS Study: A Longitudinal Evaluation of Transition Services

Resource links provided by NLM:


Further study details as provided by Holland Bloorview Kids Rehabilitation Hospital:

Primary Outcome Measures:
  • maintenance of continuous care [ Time Frame: September 2009 - September 2013 ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • 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: April 2016
Primary Completion Date: June 2014 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
Prospective LIFEspan
LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
Other: LIFEspan
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.
Other Name: LIFEspan model of linked transition care
Prospective Non-LIFEspan
LIFEspan youths with Spina Bifida
Other: Non-LIFEspan
Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.
Retrospective Non-LIFEspan
Non-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
Other: Non-LIFEspan
Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.
LIFEspan Staff
All staff affiliated with the LIFEspan model of linked transition care
Other: LIFEspan
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.
Other Name: LIFEspan model of linked transition care
Caregivers
Parents of participating youths
Other: LIFEspan
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.
Other Name: LIFEspan model of linked transition care

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
Study Population

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

Criteria

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
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00975338

Locations
Canada, Ontario
Holland Bloorview Kids Rehabilitation Hospital
Toronto, Ontario, Canada, M4G 1R8
Toronto Rehabilitation Institute
Toronto, Ontario, Canada
Sponsors and Collaborators
Shauna Kingsnorth
Ontario Neurotrauma Foundation
Investigators
Principal Investigator: Colin Macarthur, PhD The Hospital for Sick Children
Principal Investigator: Mark Bayley, MD Toronto Rehab Institute
  More Information

Publications:
Responsible Party: Shauna Kingsnorth, Clinical Study Investigator, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital
ClinicalTrials.gov Identifier: NCT00975338     History of Changes
Other Study ID Numbers: 2008-ABI-LSMODEL-706
Study First Received: September 10, 2009
Last Updated: February 2, 2015
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
Brain Injuries
Cerebral Palsy
Neural Tube Defects
Brain Damage, Chronic
Brain Diseases
Central Nervous System Diseases
Congenital Abnormalities
Craniocerebral Trauma
Nervous System Diseases
Nervous System Malformations
Trauma, Nervous System
Wounds and Injuries

ClinicalTrials.gov processed this record on February 25, 2015