Dicianno Brad E, Bellin Melissa H, Zabel Andrew T
Human Engineering Research Laboratories, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Am J Phys Med Rehabil. 2009 Dec;88(12):1002-6. doi: 10.1097/PHM.0b013e3181c1ede3.
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.
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.
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.
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.
患有脊柱裂的青少年活动能力下降（约翰逊·KL、达金·B、库恩·C等人：《美国公共卫生杂志》2007年；97：330 - 336），尤其是在从儿科护理过渡到成人护理期间，但关于活动能力与自我管理技能、心理健康或生活质量之间关系的研究很少。
在这项多中心、跨学科研究中，从地区脊柱裂诊所选取了61名脊柱裂参与者的便利样本（平均年龄 = 21.0 ± 2.1岁），参与了关于自我管理的结构化临床访谈，并完成了心理困扰、生活质量和活动能力状况的标准化自我报告测量。参与者被分为三个活动能力组：步行者、兼职轮椅使用者和全职轮椅使用者，并就结果指标进行了比较。
我们发现全职使用轮椅与生活质量下降有关，但无论活动能力状况如何，心理困扰和自我管理问题都很普遍。
研究应旨在评估与辅助技术使用相关的生活满意度，以进一步阐明轮椅设计的技术进步以及家庭和社区的通用设计如何对活动能力和生活质量产生最大影响。
