Spina bifida and mobility in the transition years

Abstract

Objective: Adolescents with spina bifida experience decreased mobility (Johnson KL, Dudgeon B, Kuehn C, et al: Am J Public Health 2007;97:330-6), especially during the time of transition from pediatric to adult care, but little research has been done on the relationships between mobility and self-management skills, psychological health, or quality of life.

Design: In this multicenter, interdisciplinary study, a convenience sample of 61 participants with spina bifida from regional spina bifida clinics (mean age = 21.0 +/- 2.1 yrs) participated in a structured clinical interview on self-management and completed standardized self-report measures of psychological distress, quality of life, and mobility status. Participants were divided into three mobility groups: ambulators, part-time wheelchair users, and full-time wheelchair users and were compared with respect to outcome measures.

Results: We found that full-time wheelchair use is associated with reduced quality of life but that psychological distress and problems with self-management are prevalent, regardless of mobility status.

Conclusion: Research should be aimed at assessing life satisfaction as it relates to assistive technology use to delineate further how technological advancements in wheelchair design and universal design of homes and communities can have the greatest impact on mobility and quality of life.