Abstract
Background: Obesity disproportionately affects children with disabilities as compared to their nondisabled peers. This is particularly concerning due to challenges with ambulation, transfer, and reliance on caregivers. The degree to which obesity in children with spina bifida (SB) impacts ambulatory status is unknown. The purpose of this study was to determine factors associated with a decline in ambulatory status among children and young adults living with SB. Methods: The National Spina Bifida Patient Registry was used to identify patients at least 5 years of age, who were community ambulators and experienced a decline in ambulation at subsequent visits following enrollment into the registry. A Cox regression model was run to test the association between the time to decline in ambulation and change in BMI with BMI used as a time-varying covariate. Additional variables included were age at enrollment, patient demographics, functional level of lesion (FLOL), diagnosis, and surgical history. Results: 353 of 3032 (11.6 %) patients who were originally identified as community ambulators experienced a decline in ambulation. Median follow up was 3.0 years (inter-quartile range 1.7,4.8). Increase in BMI was significantly associated with decline in ambulation (HR 1.03, 95 % CI 1.01–1.04, p = 0.002) as well as more proximal level of lesion (p < 0.001), myelomeningocele diagnosis (p = 0.001), greater number of surgeries (p = 0.0013), and older age at enrollment (p = 0.0038). Conclusion: A small percentage of individuals with SB experienced a decline from community ambulation status during the period observed. There are identifiable and potentially modifiable risk factors associated with this loss, including increased BMI.