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Survey of U.S. adults with spina bifida.

Morley CP, Struwe S, Pratte MA, Clayton GH, Wilson PE, Dicianno BE, Formica MK, Schad LA, Thibadeau J, Turk MA. Survey of U.S. adults with spina bifida. Disability and health journal. 2020 Apr 1; 13(2):100833.

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Abstract:

BACKGROUND: Spina Bifida (SB) is one of the most common birth defects and causes of permanent disability in the United States (US), with approximately 3.5 cases per 10,000 live births. OBJECTIVE: To identify complications associated with SB related to skin breakdown, pain, and urinary tract infections (UTIs), and to examine socio-demographic differences related to these complications. METHODS: Exploratory cross-sectional study via online of a national US convenience sample of adults with SB. RESULTS: We collected 1485 survey responses, of which 852 had complete, useable data. Skin breakdown in one or more locations during the past year was reported by 43.1%. After controlling for socio-demographic characteristics, only mobility variables remained significant predictors of skin breakdown (assistive device use OR? = 3.119, 95% CI: 1.749, 5.564; using a wheelchair OR? = 6.336, 95% CI: 3.442, 11.662). Pain in past seven days was reported by 46.9%. Single respondents (OR? = 0.621; 95% CI: 0.419, 0.921) and those with at least a Bachelor's degree (vs high school degree or less, OR? = 0.468; 95% CI: 0.283, 0.774) were less likely, and those using assistive devices were significantly more likely (OR? = 1.960; 95% CI: 1.163, 3.303), to report pain. About one-third (32.7%) reported having a UTI within the past 12 months. Notably, almost half (49.6%) of respondents did not answer this question. The presence of UTIs was not significantly related to any socio-demographic characteristics assessed. CONCLUSIONS: Adults with SB in the US live with a wide range of complications which are potentially under-monitored, with predictors of complications that require further research.




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