Kurt L. Johnson ^1*, Brian Dudgeon ¹, Carrie Kuehn ¹, William Walker ²

¹ University of Washington
² Children's Hospital and Regional Medical Center

^* To whom correspondence should be addressed. E-mail: kjohnson{at}u.washington.edu.

	Abstract

Objectives. We sought to determine the use of assistive technology among a population of individuals with spina bifida. Methods. We performed a descriptive analysis of individuals aged 13 to 27 years diagnosed with myelomeningocele (n=348) using data obtained from an existing database from Children’s Hospital and Regional Medical Center, Seattle, Washington. We summarized disease characteristics, utilization of assistive technology, community and self-care independence, and other variables. Results. Eighty-four percent of the respondents lived with at least 1 of their natural parents. Fifty-seven percent used wheelchairs, 35% used braces, and 23% used walking aids. Independent self-care was a common skill, but 72% reported limited participation in structured activities. Half were aged 18 years or older; of those, only 50% had completed high school and 71% were unemployed. Those aged younger than 18 years were all still in school (100%). Conclusions. Adolescents and young adults with spina bifida rely on assistive technology and specialized care routines to maintain their health. Assistive technology use for mobility is common; little is known about secondary complications associated with use of these technologies or the use of assistive technology to address learning disabilities and other societal barriers. Underutilization of assistive technology could delay successful transitions to independent living and community participation.

Key Words: Adolescent Health, Chronic Disease, Disability, Access to Care