The LETS Study: A Longitudinal Evaluation of Transition Services
Condition: Cerebral Palsy; Brain Injuries; Spinal Dysraphism
MeSH terms: Brain Injuries; Cerebral Palsy; Spinal Dysraphism; Neural Tube Defects
Study type: Observational

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.
    

Intervention name(s): LIFEspan; Non-LIFEspan
Intervention type(s): Other; Other
Intervention description(s): 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.; Standard of care in the absence of a formal partnership between a pediatric and an adult hospital.
Other intervention name(s): LIFEspan model of linked transition care
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
      
Keywords: health care transition, young adults, rehabilitation