Survey of U.S. adults with spina bifida.

Autor: Morley CP; Department of Public Health & Preventive Medicine, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA; Department of Family Medicine, Upstate Medical University, Syracuse, NY, USA; Department of Psychiatry & Behavioral Sciences, Upstate Medical University, Syracuse, NY, USA. Electronic address: morleycp@upstate.edu., Struwe S; Spina Bifida Association, 1600 Wilson Blvd, Suite 800, Arlington, VA, 22209, USA. Electronic address: SStruwe@sba.org., Pratte MA; Hospital Administration, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA. Electronic address: prattem@upstate.edu., Clayton GH; Department of Physical Medicine & Rehabilitation, University of Colorado Denver, USA. Electronic address: Gerald.Clayton@childrenscolorado.org., Wilson PE; Department of Physical Medicine & Rehabilitation, University of Colorado Denver, USA. Electronic address: Pamela.Wilson@childrenscolorado.org., Dicianno BE; Department of Physical Medicine & Rehabilitation, University of Pittsburgh School of Medicine School of Medicine, Kaufmann Medical Building, Suite 901, 3471 Fifth Avenue, Pittsburgh, PA, 15213, USA. Electronic address: dicianno@pitt.edu., Formica MK; Department of Public Health & Preventive Medicine, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA; Department of Urology, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA. Electronic address: formicam@upstate.edu., Schad LA; Department of Public Health & Preventive Medicine, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA. Electronic address: schadla@upstate.edu., Thibadeau J; Spina Bifida Association, 1600 Wilson Blvd, Suite 800, Arlington, VA, 22209, USA. Electronic address: jthibadeau@sbaa.org., Turk MA; Department of Physical Medicine & Rehabilitation, Upstate Medical University, Syracuse, NY, USA; Department of Public Health & Preventive Medicine, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA. Electronic address: turkm@upstate.edu.
Jazyk: angličtina
Zdroj: Disability and health journal [Disabil Health J] 2020 Apr; Vol. 13 (2), pp. 100833. Date of Electronic Publication: 2019 Aug 01.
DOI: 10.1016/j.dhjo.2019.100833
Abstrakt: 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.
(Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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