Factors Associated with Mobility Outcomes in a National Spina Bifida Patient Registry

Objective To provide descriptive data on ambulatory ability and muscle strength in a large cohort of individuals with spina bifida enrolled in a National Spina Bifida Patient Registry and to investigate factors associated with ambulatory status. Design Cross-sectional analysis of data from a multisite patient registry. Results Descriptive analysis of mobility variables for 2604 individuals with spina bifida aged 5 and older are presented from 19 sites in the United States. Analysis of a subset of National Spina Bifida Patient Registry data from 380 individuals from 3 sites accompanied by data from a specialized spina bifida electronic medical record revealed that those with no history of a shunt, lower motor level, and no history of hip or knee contracture release surgery were more likely to be ambulatory at the community level than at the household or wheelchair level. Conclusion This study is the first to examine factors associated with ambulatory status in a large sample of individuals with myelomeningocele and nonmyelomeningocele subtypes of spina bifida. Results of this study delineate the breadth of strength and functional abilities within the different age groups and subtypes of spina bifida. The results may inform physicians of the characteristics of those with varying ambulatory abilities. To Claim CME Credits: Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME Objectives: Upon completion of this article, the reader should be able to: (1) Understand the scope of mobility limitations in individuals with spina bifida; (2) Appreciate the impact of certain factors on themobility status of individuals with spina bifida; and (3) Use knowledge of factors affecting mobility in individuals with spina bifida to direct treatment. Level: Advanced Accreditation: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The Association of Academic Physiatrists designates this activity for a maximum of 1.5 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.