Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Brunton, Laura

Abstract

The Transitional and Lifelong Care (TLC) program is a multidisciplinary clinical service providing comprehensive, coordinated care to adolescents and adults with spina bifida (SB). This study sought to identify the most common health concerns among this population at initial consultation and identify patient factors related to these concerns to ultimately improve health care delivery. A retrospective chart review was performed. Descriptive analyses were completed and associations between concerns and patient factors were determined using Spearman’s rho correlation coefficients. A multiple linear regression was performed to estimate the relationship between patient factors and total number of concerns reported. Ninety-four patient charts were reviewed (Mean age=29.04 ± 13.8 years). On average, patients reported 9 health concerns with care coordination being the most prevalent concern. Patient factors were not related to specific or total number of health concerns. Individualized, coordinated care and a medical home are warranted for adults with SB.

Summary for Lay Audience

In recent decades, an increasing number of people with spina bifida (SB), a complex childhood-onset disability, are surviving well into adulthood, largely due to medical and technological advances in health care (Lorber, 2008; Mitchell et al., 2004; Shin et al., 2012). To ensure optimal health across the lifespan, adolescents and adults with SB require coordinated and planned health care transition services as they graduate from paediatric to adult health care (Binks, Barden, Burke, & Young, 2007; Fremion & Dosa, 2019). The Transitional and Lifelong Care (TLC) Program at Parkwood Institute in London, Ontario, is a program unique to Southwestern Ontario designed to fill this specific gap between paediatric and adult health care. The program provides ongoing multidisciplinary coordination of care and a ‘medical home’ for people with SB and other childhood-onset disabilities. However, like many other transitional models, the TLC program has not yet been evaluated or thoroughly studied (Bennett, Towns, & Steinbeck, 2005; Grant, Pan, & Grant, 2011; Mcdonagh, 2007). To improve the services provided by the TLC program and determine whether implementation of this model can improve the transition and standard of care received by adolescents and adults with SB, more needs to be known about the patients served by the program. The purpose of the present study was to identify the most common health care concerns or challenges that TLC patients with SB face and determine whether there are recognizable patient factors that are consistently related to these concerns. It is expected that this research will support future program evaluation and contribute to improvements in targeted health care delivery for TLC patients with SB, ultimately resulting in improved patient experience and outcomes.

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