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Urologic and gastrointestinal symptoms in the dystroglycanopathies
Journal article   Open access   Peer reviewed

Urologic and gastrointestinal symptoms in the dystroglycanopathies

Cameron D Crockett, Laura A Bertrand, Christopher S Cooper, Riad M Rahhal, Ke Liu, M Bridget Zimmerman, Steven A Moore and Katherine D Mathews
Neurology, Vol.84(5), pp.532-539
02/03/2015
DOI: 10.1212/WNL.0000000000001213
PMCID: PMC4336067
PMID: 25568299
url
https://doi.org/10.1212/WNL.0000000000001213View
Published (Version of record) Open Access

Abstract

To determine the frequency of urologic and gastrointestinal (GI) symptoms in a cohort of individuals with dystroglycanopathy compared with healthy household controls. Participants in a North American dystroglycanopathy natural history study (NCT00313677) and other members of their households completed a questionnaire modified from validated instruments and clinical criteria. Urologic and GI symptom frequency, effect on patient life, and medications taken for these symptoms were assessed. Those younger than 4 years or not toilet trained were excluded. Healthy human bladder, esophagus, and duodenum from surgical specimens were immunostained for glycosylated α-dystroglycan. Thirty of 58 potential participants with dystroglycanopathy (51.7%) and 16 household controls participated. Subjects were aged 6 to 51 years (mean 26.7); 60.0% were female. Controls were aged 7 to 55 years (mean 34.6); 56.3% were female. The dystroglycanopathy cohort had higher frequency of urinary voiding symptoms (p = 0.02), higher urologic symptom scores (p = 0.05), and higher dysphagia symptom scores (p = 0.04). A correlation existed between urologic symptom score and effect on life (r = 0.71; 95% confidence interval 0.46, 0.85; p < 0.0001) and between dysphagia symptom score and effect on life (r = 0.72; 95% confidence interval 0.48, 0.86; p < 0.0001). Glycosylated α-dystroglycan was present in visceral smooth muscle of all normal tissues analyzed. Urologic symptoms and dysphagia are reported more frequently by individuals with dystroglycanopathies than by household controls. These symptoms can cause a perceived negative effect on patient life. Our results suggest urologic and GI dysfunction may be part of the dystroglycanopathy phenotype, and that questions about these symptoms should be incorporated into routine care because they may influence medical management.
Urologic Diseases - psychology Gastrointestinal Diseases - psychology Humans Middle Aged Male Gastrointestinal Diseases - diagnosis Young Adult Deglutition Disorders - diagnosis Adolescent Urologic Diseases - diagnosis Adult Female Surveys and Questionnaires Quality of Life - psychology Deglutition Disorders - psychology Dystroglycans - analysis Child Cohort Studies

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