NCT00975338

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.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
149

participants targeted

Target at P50-P75 for all trials

Timeline
Completed

Started Sep 2009

Longer than P75 for all trials

Geographic Reach
1 country

2 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

September 1, 2009

Completed
9 days until next milestone

First Submitted

Initial submission to the registry

September 10, 2009

Completed
1 day until next milestone

First Posted

Study publicly available on registry

September 11, 2009

Completed
4.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 1, 2014

Completed
2.1 years until next milestone

Study Completion

Last participant's last visit for all outcomes

July 12, 2016

Completed
Last Updated

October 23, 2023

Status Verified

October 1, 2023

Enrollment Period

4.8 years

First QC Date

September 10, 2009

Last Update Submit

October 19, 2023

Conditions

Cerebral PalsyBrain InjuriesSpinal Dysraphism

Keywords

health care transition, young adults, rehabilitation

Outcome Measures

Primary Outcomes (1)

  • maintenance of continuous care

    September 2009 - September 2013

Secondary Outcomes (1)

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

    September 2009 - September 2013

Study Arms (5)

Prospective LIFEspan

LIFEspan youths with Cerebral Palsy or Acquired Brain Injury

Other: LIFEspan

Prospective Non-LIFEspan

LIFEspan youths with Spina Bifida

Other: Non-LIFEspan

Retrospective Non-LIFEspan

Non-LIFEspan youths with Cerebral Palsy or Acquired Brain Injury

Other: Non-LIFEspan

LIFEspan Staff

All staff affiliated with the LIFEspan model of linked transition care

Other: LIFEspan

Caregivers

Parents of participating youths

Other: LIFEspan

Interventions

LIFEspanOTHER

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.

Also known as: LIFEspan model of linked transition care
CaregiversLIFEspan StaffProspective LIFEspan
Non-LIFEspanOTHER

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

Prospective Non-LIFEspanRetrospective Non-LIFEspan

Eligibility Criteria

Age16 Years - 23 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64)
Sampling MethodNon-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

You may qualify if:

  • 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

You may not qualify if:

  • N/A

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

Holland Bloorview Kids Rehabilitation Hospital

Toronto, Ontario, M4G 1R8, Canada

Location

Toronto Rehabilitation Institute

Toronto, Ontario, Canada

Location

Related Publications (6)

  • 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.

    PMID: 22587415BACKGROUND

  • 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

    RESULT

  • 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.

    PMID: 24919941RESULT

  • 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.

    PMID: 25660004RESULT

  • 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.

    PMID: 34631624RESULT

  • 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.

    PMID: 39713020RESULT

MeSH Terms

Conditions

Cerebral PalsyBrain InjuriesSpinal Dysraphism

Interventions

Longevity

Condition Hierarchy (Ancestors)

Brain Damage, ChronicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesCraniocerebral TraumaTrauma, Nervous SystemWounds and InjuriesNeural Tube DefectsNervous System MalformationsCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and Abnormalities

Intervention Hierarchy (Ancestors)

AgingGrowth and DevelopmentPhysiological Phenomena

Study Officials

  • Colin Macarthur, PhD

    The Hospital for Sick Children

    PRINCIPAL INVESTIGATOR

  • Mark Bayley, MD

    Toronto Rehab Institute

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Clinical Study Investigator, Bloorview Research Institute

Study Record Dates

First Submitted

September 10, 2009

First Posted

September 11, 2009

Study Start

September 1, 2009

Primary Completion

June 1, 2014

Study Completion

July 12, 2016

Last Updated

October 23, 2023

Record last verified: 2023-10

Data Sharing

IPD Sharing
Will not share

Locations

CA(2)