Factors associated with a decline in ambulatory status among children and adults with Spina Bifida in the National Spina Bifida Patient Registry

Michael Conklin ¹, Betsy Hopson ², Jonathan Castillo ³

¹University of Alabama at Birmingham, Department of Orthopedics, Birmingham, AL, USA.
²University of Alabama at Birmingham, Department of Medicine, Birmingham, AL, USA; University of Alabama at Birmingham, Department of Neurosurgery, Birmingham, AL, USA.
³Developmental Medicine, University of Nebraska Medical Center, Omaha, NE, USA.
⁴University of Wisconsin-Milwaukee, School of Nursing, College of Health Professions and Sciences, Milwaukee, WI, USA; Children's Wisconsin, Department of Nursing Research and Evidence-Based Practice, Milwaukee, WI, USA.
⁵Department of Biostatistics, Department of Pediatrics, UAB School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA.
⁶Baylor College of Medicine, Department of Pediatrics, Section of Hematology-Oncology, Houston, TX, USA.
⁷Department of Pediatrics, USC Keck School of Medicine, Children's Hospital Los Angeles, Los Angeles, CA, USA.
⁸Indiana University School of Medicine - Department of Developmental Pediatrics, Indianapolis, IN, USA.
⁹University of Texas Southwestern Medical Center, Scottish Rite for Children, Dallas, TX, USA.
¹⁰District Medical Group Children's Rehabilitative Services, Phoenix, AZ, USA.
¹¹University of Alabama at Birmingham, Department of Neurosurgery, Birmingham, AL, USA.

⁰University of Alabama at Birmingham, Department of Orthopedics, Birmingham, AL, USA.

Disability and Health Journal +

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November 24, 2025

View abstract on PubMed

Summary

Increased BMI is linked to a decline in walking ability for children with spina bifida (SB). This study identified modifiable risk factors, like BMI, associated with losing ambulation in SB patients.

Area Of Science

Pediatric disability research
Neurology
Public health

Background

Obesity affects children with disabilities, including those with spina bifida (SB), more than their peers.
Challenges in mobility and daily care are amplified by obesity in this population.
The impact of obesity on ambulatory status in children with SB is not well understood.

Purpose Of The Study

To investigate factors associated with a decline in ambulatory status among children and young adults with spina bifida.
To identify potential modifiable risk factors for ambulation loss in the SB population.

Main Methods

Utilized the National Spina Bifida Patient Registry to identify individuals aged 5+ who were community ambulators and experienced ambulation decline.
Employed a Cox regression model with BMI as a time-varying covariate to assess the association between BMI change and time to ambulation decline.
Included variables such as age at enrollment, demographics, functional level of lesion, diagnosis, and surgical history.

Main Results

11.6% of community ambulators with SB experienced a decline in ambulation over a median follow-up of 3.0 years.
Increased Body Mass Index (BMI) was significantly associated with a decline in ambulation (HR 1.03, p=0.002).
Other significant factors included a more proximal level of lesion, myelomeningocele diagnosis, increased number of surgeries, and older age at enrollment.

Conclusions

A small proportion of individuals with spina bifida lost community ambulation during the study period.
Identifiable and potentially modifiable risk factors for ambulation decline exist.
Increased BMI is a key modifiable risk factor associated with loss of ambulation in individuals with SB.

Keywords:

Ambulation BMI Health care disparities Myelomeningocele Obesity Spina Bifida

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