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

Abstract

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.

Figure 1

Phase I NSBPR variables

Figure 2

Phase II Additional EMR Variables

Figure 3

Figure 3a. Number of Phase I participants with myelomeningocele subtype (y axis) sorted by ambulatory status and motor level Figure 3b. Number of Phase I participants with non-myelomeningocele subtypes (y axis) sorted by ambulatory status and motor level

Figure 4

Figure 4a. Number of Phase I participants with myelomeningocele subtype (y axis) sorted by ambulatory status and age category Figure 4b. Number of Phase I participants with non-myelomeningocele subtypes (y axis) sorted by ambulatory status and age category