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APHA Scientific Session and Event Listing

Alyssa M. DiGiacomo, MPH, Brian J. Dudgeon, PhD, and Kurt L. Johnson, PhD. Department of Rehabilitation Medicine, University of Washington, Box 356490, Seattle, WA 98195, 206 221-5302, adigiaco@u.washington.edu

While the incidence of spina bifida has recently been declining, a significant number of individuals with spina bifida are now reaching adolescence or young adulthood. However, little is known about the range of assistive technologies (AT) used, environmental barriers encountered, prevalence of secondary conditions such as pain and depression, or educational, employment and independent living outcomes experienced by this population. To better understand these issues, a telephone survey was administered to 60 adolescents and young adults (age 16-25) with spina bifida recruited throughout the US and analyzed. We concluded that although 60% reported using wheelchairs, 55% orthotics to aid mobility, and 75% reported bladder catheterization, participants were not using a whole class of AT that might have benefited them in school and later in employment. Since many may be presumed to have significant learning disabilities, this finding is of concern. The majority also had moderate pain, though levels of depression were similar to that of the general population for this age group. Despite their reported modest satisfaction with their lives, they participated on a very limited basis in employment, remained for the most part dependent on their families, and had few responsibilities with respect to independent living. In addition, physical and attitudinal barriers were commonly reported and with impact on access to transportation, public and community programs, and community participation generally. Taken together, these factors indicate that this population is at high risk for failing to make a successful transition into independent adulthood.

Learning Objectives:

• 1. Identify key issues in use of assistive technology in adolescents with spina bifida
• 2. Identify estimates of prevalence of occurrence of pain, depression, and other secondary conditions in adolescence with spina bifida
• 3. Discuss barriers to successful transition to adulthood and independence for adolescents with spina bifida.

Keywords: Disability, Adolescents

Presenting author's disclosure statement:

Not Answered

Handout (.pdf format, 178.0 kb)