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

Brad E. Dicianno, Amol Karmarkar, Amy Houtrow, Theresa M. Crytzer, Katelyn M. Cushanick, Andrew McCoy, Pamela Wilson, James Chinarian, Jacob Neufeld, Kathryn Smith, Diane M. Collins

Research output: Contribution to journalArticlepeer-review

51 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)1015-1025
Number of pages11
JournalAmerican Journal of Physical Medicine and Rehabilitation
Issue number12
StatePublished - Dec 1 2015


  • Mobility
  • Rehabilitation
  • Spina Bifida
  • Spinal Dysraphism
  • Walking
  • Wheelchair

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation


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