Survey of U.S. adults with spina bifida.


Journal

Disability and health journal
ISSN: 1876-7583
Titre abrégé: Disabil Health J
Pays: United States
ID NLM: 101306633

Informations de publication

Date de publication:
04 2020
Historique:
received: 16 04 2019
revised: 12 07 2019
accepted: 26 07 2019
pubmed: 11 8 2019
medline: 23 12 2020
entrez: 11 8 2019
Statut: ppublish

Résumé

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. 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. Exploratory cross-sectional study via online of a national US convenience sample of adults with SB. 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. 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.

Sections du résumé

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.

Identifiants

pubmed: 31399347
pii: S1936-6574(19)30123-2
doi: 10.1016/j.dhjo.2019.100833
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

100833

Informations de copyright

Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.

Auteurs

Christopher P 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.

Sara Struwe (S)

Spina Bifida Association, 1600 Wilson Blvd, Suite 800, Arlington, VA, 22209, USA. Electronic address: SStruwe@sba.org.

Morgan A Pratte (MA)

Hospital Administration, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA. Electronic address: prattem@upstate.edu.

Gerald H Clayton (GH)

Department of Physical Medicine & Rehabilitation, University of Colorado Denver, USA. Electronic address: Gerald.Clayton@childrenscolorado.org.

Pamela E Wilson (PE)

Department of Physical Medicine & Rehabilitation, University of Colorado Denver, USA. Electronic address: Pamela.Wilson@childrenscolorado.org.

Brad E 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.

Margaret K 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.

Laura A Schad (LA)

Department of Public Health & Preventive Medicine, Upstate Medical University, 750 E Adams St, Syracuse, NY, USA. Electronic address: schadla@upstate.edu.

Judy Thibadeau (J)

Spina Bifida Association, 1600 Wilson Blvd, Suite 800, Arlington, VA, 22209, USA. Electronic address: jthibadeau@sbaa.org.

Margaret A 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.

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