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

Dicianno, Brad E. MD; Karmarkar, Amol PhD, MPH, OTR; Houtrow, Amy MD, PhD, MPH; Crytzer, Theresa M. DPT, ATP; Cushanick, Katelyn M. MOT; McCoy, Andrew BS; Wilson, Pamela MD; Chinarian, James MD; Neufeld, Jacob MD; Smith, Kathryn RN, DrPH; Collins, Diane M. PhD, OT

American Journal of Physical Medicine & Rehabilitation: December 2015 - Volume 94 - Issue 12 - p 1015–1025
doi: 10.1097/PHM.0000000000000404
Original Research Articles: CME Article . 2015 Series . Number 12

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

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.

Supplemental digital content is available in the text.

From the Department of Physical Medicine and Rehabilitation, University of Pittsburgh Medical Center (UPMC), Pittsburgh, PA (BED, AH, KMC, AM); Division of Rehabilitation Sciences, University of Texas Medical Branch, Galveston, TX (AK); Department of Pediatrics, UPMC, Pittsburgh, PA (AH); Department of Rehabilitation Science and Technology, University of Pittsburgh, Pittsburgh, PA (TMC); Department of Physical Medicine and Rehabilitation, Children’s Hospital Colorado, Aurora, CO (PW); Departments of Pediatrics and Physical Medicine and Rehabilitation, Wayne State University School of Medicine, Detroit, MI (JC); Department of Physical Medicine and Rehabilitation, St. Luke’s Children’s Hospital, Boise, ID (JN); USC University Center for Excellence in Developmental Disabilities, Children’s Hospital Los Angeles, Los Angeles, CA (KS); and Department of Occupational Therapy, University of Texas Medical Branch, Galveston, TX (DMC).

All correspondence and requests for reprints should be addressed to: Brad E. Dicianno, MD, Department of Physical Medicine and Rehabilitation, Human Engineering Research Laboratories, University of Pittsburgh School of Medicine, 6425 Penn Ave, Suite 400, Pittsburgh, PA 15206.

This manuscript has not been published and is not under consideration for publication elsewhere. Data from this manuscript were accepted as part of an abstract and were presented at the AAP 2014 Annual Assembly.

This project was funded by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, Grant #1UO1DDD000744.01 and by the Center for Rehabilitation Research Using Large Datasets (CRRLD), Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (R24HD065702-03).

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention or the National Institutes of Health.

Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (

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