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Cerebral PalsyLETSNCT00975338

The LETS Study: A Longitudinal Evaluation of Transition Services

An observational study of Cerebral Palsy and Brain Injuries, run by Holland Bloorview Kids Rehabilitation Hospital at 2 sites in Canada.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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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. Read more about this study

Who is it for?
Ages 16 to 23 years
Conditions the study is for
Cerebral Palsy, Brain Injuries, Spinal Dysraphism
What is being tested?
LIFEspan and Non-LIFEspan
How many people
149 participants
Where
2 sitesCanada
Study dates
Sep 2009to 12 Jul 2016
Phase
Observational
Are there results?
None posted in the registry

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 16 to 23 years
  • All sexes
  • No healthy volunteers
  • Child, Adult

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

Who may be able to join

  • 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

Who cannot join

  • N/A

Trial locations and contacts

2 sites in 1 country.

Canada2 sites

  • Holland Bloorview Kids Rehabilitation Hospital

    Toronto, Ontario, M4G 1R8

  • Toronto Rehabilitation Institute

    Toronto, Ontario

Other trials in Canada

About this study

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.

Read the 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.

Being tested
LIFEspan, Non-LIFEspan
Keywords
health care transition, young adults, rehabilitation
Medical subject headings
Cerebral Palsy, Brain Injuries, Spinal Dysraphism

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • LIFEspanOther

    Also called 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.

  • Non-LIFEspanOther

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

Study groups in NCT00975338
Study groupRoleWhat they receive
Prospective LIFEspanLIFEspan youths with Cerebral Palsy or Acquired Brain Injury
Receives: Other: LIFEspan
Prospective Non-LIFEspanLIFEspan youths with Spina Bifida
Receives: Other: Non-LIFEspan
Retrospective Non-LIFEspanNon-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury
Receives: Other: Non-LIFEspan
LIFEspan StaffAll staff affiliated with the LIFEspan model of linked transition care
Receives: Other: LIFEspan
CaregiversParents of participating youths
Receives: Other: LIFEspan

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. maintenance of continuous care

    Measured: September 2009 - September 2013

Secondary outcomes (1)

  1. patterns of health care utilization, health, well-being, social participation and transition readiness

    Measured: September 2009 - September 2013

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted11 Sep 2009 (estimated)
  2. Study startSep 2009
  3. Primary completionJun 2014
  4. Study completion12 Jul 2016

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
149 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT00975338
Sponsor's protocol ID
2008-ABI-LSMODEL-706
Acronym
LETS
Status last verified
Oct 2023
First submitted
10 Sep 2009
Last updated
23 Oct 2023
Results posted
No
Data monitoring committee
No
Individual data sharing
No

Publications

  • 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.

    PubMed 22587415

  • 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

  • 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.

    PubMed 24919941

  • 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.

    PubMed 25660004

  • 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.

    PubMed 34631624

  • 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.

    PubMed 39713020

Questions about this trial

What is this clinical trial studying?

An observational study of Cerebral Palsy and Brain Injuries, run by Holland Bloorview Kids Rehabilitation Hospital at 2 sites in Canada.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 23 Oct 2023. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 2 sites in Canada. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

maintenance of continuous care (time frame: September 2009 - September 2013). It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT00975338, which also lists 6 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 23 Oct 2023.

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