The LETS Study: A Longitudinal Evaluation of Transition Services

Cerebral Palsy Clinical Trial

— LETS  

Official title:

The LETS Study: A Longitudinal Evaluation of Transition Services

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT00975338
• Other study ID #: 2008-ABI-LSMODEL-706
• Status: Completed
• Start date: September 2009
• Est. completion date: July 12, 2016

Study information

• Verified date: October 2023
• Source: Holland Bloorview Kids Rehabilitation Hospital
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 149
• Est. completion date: July 12, 2016
• Est. primary completion date: June 2014
• Accepts healthy volunteers: No
• Gender: All
• Age group: 16 Years to 23 Years

Eligibility

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

Related Conditions & MeSH terms

• Brain Injuries
• Cerebral Palsy
• Neural Tube Defects
• Spinal Dysraphism

Intervention

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.
• Non-LIFEspan
Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.

Locations

Country	Name	City	State
Canada	Holland Bloorview Kids Rehabilitation Hospital	Toronto	Ontario
Canada	Toronto Rehabilitation Institute	Toronto	Ontario

Sponsors (2)

Lead Sponsor	Collaborator
Holland Bloorview Kids Rehabilitation Hospital	Ontario Neurotrauma Foundation

Country where clinical trial is conducted

Canada, 

References & Publications (6)

Hamdani Y, Proulx M, Kingsnorth S, Lindsay S, Maxwell J, Colantonio A, Macarthur C, Bayley M. The LIFEspan model of transitional rehabilitative care for youth with disabilities: healthcare professionals' perspectives on service delivery. J Pediatr Rehabil — View Citation

Kingsnorth S, Hamdani Y, Cheng C, Lindsay S, Maxwell J, Colantonio A, Bayley M, Macarthur C.Health status and health care utilization profiles of adolescents with disabilities. Health Care Transitions. 2023; 1: 100004.

Kingsnorth S, Lindsay S, Maxwell J, Hamdani Y, Colantonio A, Zhu J, Bayley MT, Macarthur C. Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care. Fro — View Citation

Kingsnorth, S., Lindsay, S., Maxwell, J., Tsybina, I., Seo, H., Macarthur, C., & Bayley, C. (2011). Implementing the LIFEspan model of transition care for youth with childhood onset disabilities. International Journal of Adolescent & Child Health, 3(4), 5

Lindsay S, Proulx M, Maxwell J, Hamdani Y, Bayley M, Macarthur C, Colantonio A. Gender and Transition From Pediatric to Adult Health Care Among Youth With Acquired Brain Injury: Experiences in a Transition Model. Arch Phys Med Rehabil. 2016 Feb;97(2 Suppl — View Citation

Tsybina I, Kingsnorth S, Maxwell J, Bayley M, Lindsay S, McKeever P, Colantonio A, Hamdani Y, Healy H, Macarthur C. Longitudinal Evaluation of Transition Services ("LETS Study"): protocol for outcome evaluation. BMC Pediatr. 2012 May 15;12:51. doi: 10.1186/1471-2431-12-51. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	maintenance of continuous care		September 2009 - September 2013
Secondary	patterns of health care utilization, health, well-being, social participation and transition readiness		September 2009 - September 2013