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 (NSBPR) and to investigate factors associated with ambulatory status. Design Cross-sectional analysis of data from a multi-site patient registry Results Descriptive analysis of mobility variables for 2604 individuals with spina bifida age 5 and above are presented from 19 sites in the United States. Analysis of a subset of NSBPR data from 380 individuals from three 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 non-myelomeningocele subtypes of SB. Results of this study delineate the breadth of strength and functional abilities within the different age groups and subtypes of SB. The results may inform clinicians of the characteristics of those with varying ambulatory abilities.

Use of the iMHere system in spina bifida is feasible and was associated with short-term self-reported improvements in self-management skill. This system holds promise for use in many diverse chronic care models to support and increase self-management skills.

Pressures recorded indicate high risk for skin ulceration. Cushioning was effective only in the control group with knees extended. That knee extension significantly lowered average seated pressures is important, as many sledge hockey players utilize positioning with larger knee flexion angles. Implications for Rehabilitation Ice sledge hockey is a fast growing adaptive sport. Adaptive sports have been associated with several positive improvements in overall health and quality of life, though may be putting players at risk for skin ulceration. Measured static seated pressure in sledges greatly exceeds current clinically accepted clinical guidelines. With modern improvements in wheelchair pressure relief/cushioning there are potential methods for improvement of elevated seated pressure in ice hockey sledges.

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