Gastrointestinal and genitourinary symptoms in facioscapulohumeral muscular dystrophy: Prevalence and impact

Michael R Cole; Christopher S Cooper; Eyad M Hanna; M Bridget Zimmerman; June Kinoshita; Katherine D Mathews

doi:10.1002/mus.28028

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Gastrointestinal and genitourinary symptoms in facioscapulohumeral muscular dystrophy: Prevalence and impact

Journal article

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Gastrointestinal and genitourinary symptoms in facioscapulohumeral muscular dystrophy: Prevalence and impact

Michael R Cole, Christopher S Cooper, Eyad M Hanna, M Bridget Zimmerman, June Kinoshita and Katherine D Mathews

Muscle & nerve, Vol.69(3), pp.325-333

03/2024

DOI: 10.1002/mus.28028

PMID: 38158588

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Abstract

Anecdotally, patients with facioscapulohumeral muscular dystrophy (FSHD) describe gastrointestinal (GI) and genitourinary (GU) symptoms. We explored the prevalence of GI and GU symptoms and their impact on quality of life (QOL) in people with FSHD compared to healthy household controls. In this descriptive, cross-sectional study, we emailed a survey exploring GI and GU symptoms to all FSHD Society patient contacts (n = 3507). We invited those with FSHD and unaffected household controls to respond. Non-parametric statistics were used to compare symptom frequency and impact of symptoms between respondents with FSHD and household controls. Within the FSHD group, symptom frequency was assessed relative to measures of disease progression (need for ambulatory or respiratory support). Surveys from 701 respondents (652 with FSHD) ≥18 years old were included in analysis. Those with FSHD had symptoms affecting both GI and GU systems more frequently than controls using ordinal rating of symptom frequency. Within the FSHD group, more advanced disease was associated with increased symptom frequency. QOL was negatively impacted by the GI and GU symptoms. There was no difference between groups in use of medications to treat these symptoms. Recognition and treatment of GI and GU symptoms in people with FSHD, particularly those with more advanced disease, could improve QOL. Additional investigation is required to confirm these findings and understand the physiology.

Quality of Life

gastrointestinal

genitourinary

prevalence

facioscapulohumeral muscular dystrophy

UIOWA OA Agreement

Details

Title: Subtitle: Gastrointestinal and genitourinary symptoms in facioscapulohumeral muscular dystrophy: Prevalence and impact
Creators: Michael R Cole - University of Iowa Hospitals and Clinics
Christopher S Cooper - University of Iowa
Eyad M Hanna - University of Iowa Hospitals and Clinics
M Bridget Zimmerman - University of Iowa
June Kinoshita - FSH Society
Katherine D Mathews - University of Iowa
Resource Type: Journal article
Publication Details: Muscle & nerve, Vol.69(3), pp.325-333
DOI: 10.1002/mus.28028
PMID: 38158588
NLM abbreviation: Muscle Nerve
ISSN: 0148-639X
eISSN: 1097-4598
Publisher: Wiley
Grant note: NIH grants. Grant Numbers: UL1TR002537, 2 P01 HL0496925, 1 R01 HL 119882, 1 R34 AT008349-01, 5 UM1 AR063381-02, 2 U54 NS053672, 1 R01 MG104363-01A1, IU01 DK108334, 1 U54 TR0013564, 1 R01 CA193249 FARA Muscular Dystrophy Association FSHD Society grant. Grant Number: 18513100 (BR01)
Language: English
Electronic publication date: 12/29/2023
Date published: 03/2024
Academic Unit: Neurology; Stead Family Department of Pediatrics; Iowa Neuroscience Institute; Biostatistics; Gastroenterology, Hepatology, Pancreatology, and Nutrition; Neurology (Pediatrics); Urology; Medicine Administration
Record Identifier: 9984539758702771

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