the lets study: a longitudinal evaluation of transition services

Conditions: Cerebral Palsy; Brain Injuries; Spinal Dysraphism

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.

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

Keywords: health care transition, young adults, rehabilitation