Abstract

Background: LIFEspan (“Living Independently and Fully Engaged”) is a linked transition service model for youth and young adults with childhood-onset disabilities offered via an inter-agency partnership between two rehabilitation hospitals (one pediatric and one adult) in Toronto, Canada.Objective: The objective was to evaluate healthcare outcomes (continuity of care and healthcare utilization) for clients enrolled in LIFEspan.Methods: A prospective, longitudinal, observational mixed-method study design was used. The intervention group comprised youth with Acquired Brain Injury (ABI) and Cerebral Palsy (CP) enrolled in LIFEspan. A prospective comparison group comprised youth with Spina Bifida (SB) who received standard care. A retrospective comparison group comprised historical, disability-matched clients (with ABI and CP) discharged prior to model introduction. Medical charts were audited to determine continuity of care, i.e., whether study participants had at least one visit to an adult provider within 1 year post-discharge from the pediatric hospital. Secondary outcomes related to healthcare utilization were obtained from population-based, health service administrative datasets. Data were collected over a 3-year period: 2 years pre and 1 year post pediatric discharge. Rates were estimated per person-year. Fisher's Exact Test was used to examine differences between groups on the primary outcome, while repeated measures GEE Poisson regression was used to estimate rate ratios (post vs. pre) with 95% confidence intervals for the secondary outcomes.Results: Prospective enrolment comprised 30 ABI, 48 CP, and 21 SB participants. Retrospective enrolment comprised 15 ABI and 18 CP participants. LIFEspan participants demonstrated significantly greater continuity of care (45% had engagement with adult services in the year following discharge at 18 years), compared to the prospective SB group (14%). Healthcare utilization data were inconsistent with no significant changes in frequency of physician office visits, emergency department visits, or hospitalizations for clients enrolled in LIFEspan in the year following discharge, compared to the 2 years prior to discharge.Conclusion: Introduction of the LIFEspan model increased continuity of care, with successful transfer from pediatric to adult services for clients enrolled. Data on longer-term follow-up are recommended for greater understanding of the degree of adult engagement and influence of LIFEspan on healthcare utilization following transfer.

Highlights

  • Advances in technology and healthcare practice have significantly increased survival rates for individuals with childhood-onset disabilities, with most living well into adulthood (1, 2)

  • 132 clients participated in the study: the prospective arm included 78 clients in the LIFEspan group (30 Acquired Brain Injury (ABI) and 48 Cerebral Palsy (CP)) and 21 Spina Bifida (SB) clients in the prospective comparison group

  • The retrospective “historical” comparison group consisted of 33 participants (15 ABI and 18 CP)

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Summary

Introduction

Advances in technology and healthcare practice have significantly increased survival rates for individuals with childhood-onset disabilities, with most living well into adulthood (1, 2). In Canada, these young adults must transition from pediatric to adult healthcare systems at 18 years of age to manage their lifelong rehabilitation needs (3). In this transition, healthcare delivery should be a coordinated and uninterrupted provision of developmentally appropriate and comprehensive services (4). Transition from the pediatric to adult healthcare system is a complex process, ; and there is significant evidence that healthcare systems are not yet designed to effectively meet lifelong rehabilitation needs (2, 5, 6). LIFEspan (“Living Independently and Fully Engaged”) is a linked transition service model for youth and young adults with childhood-onset disabilities offered via an inter-agency partnership between two rehabilitation hospitals (one pediatric and one adult) in Toronto, Canada

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