Survey of U.S. adults with spina bifida.

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.