Clinical trial NCT00975338: The LETS Study: A Longitudinal Evaluation of Transition Services
Official title: The LETS Study: A Longitudinal Evaluation of Transition Services
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Cerebral Palsy
Brain Injuries
Spinal Dysraphism
Keywords: health care transition, young adults, rehabilitation
Lead sponsor: Holland Bloorview Kids Rehabilitation Hospital
Sponsor class: OTHER
Collaborators: name: Ontario Neurotrauma Foundation
First posted: 2009-09-11
Enrollment: 149
Sex: ALL
Minimum age (years): 16
Maximum age (years): 23
Standard ages: CHILD
ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
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

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.

Eligibility 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

Primary outcomes:
measure: maintenance of continuous care
timeFrame: September 2009 - September 2013
Secondary outcomes:
measure: patterns of health care utilization, health, well-being, social participation and transition readiness
timeFrame: September 2009 - September 2013
Other outcomes:
Locations:
city: Toronto
country: Canada
facility: Holland Bloorview Kids Rehabilitation Hospital
state: Ontario
city: Toronto
country: Canada
facility: Toronto Rehabilitation Institute
state: Ontario
Study officials:
affiliation: The Hospital for Sick Children
name: Colin Macarthur, PhD
role: PRINCIPAL_INVESTIGATOR
affiliation: Toronto Rehab Institute
name: Mark Bayley, MD
role: PRINCIPAL_INVESTIGATOR
References:
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.
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), 547-560.https://www.novapublishers.com/catalog/product _info.php?products_id=23001
citation: 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 Med. 2014;7(1):79-91. doi: 10.3233/PRM-140271.
citation: 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):S33-9. doi: 10.1016/j.apmr.2014.04.032. Epub 2015 Feb 4.
citation: 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. Front Pediatr. 2021 Sep 17;9:728640. doi: 10.3389/fped.2021.728640. eCollection 2021.
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 Transit. 2023 Jun 21;1:100004. doi: 10.1016/j.hctj.2023.100004. eCollection 2023.