Health Concerns of Adolescents and Adults with Spina Bifida

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 healthcare (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 healthcare transition services as they graduate from paediatric to adult healthcare (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 that was designed to fill this specific gap between paediatric and adult healthcare and to provide ongoing multidisciplinary coordination of care 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). 

In order 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 healthcare delivery for TLC patients with SB, ultimately resulting in improved patient experience and outcomes.