A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease

Amelia D Moser; Eric Epping; Patricia Espe-Pfeifer; Erin Martin; Leah Zhorne; Katherine Mathews; Martha Nance; Denise Hudgell; Oliver Quarrell; Peg Nopoulos

doi:10.2217/nmt-2017-0019

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A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease

Journal article

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A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease

Amelia D Moser, Eric Epping, Patricia Espe-Pfeifer, Erin Martin, Leah Zhorne, Katherine Mathews, Martha Nance, Denise Hudgell, Oliver Quarrell and Peg Nopoulos

Neurodegenerative disease management, Vol.7(5), pp.307-315

10/2017

DOI: 10.2217/nmt-2017-0019

PMID: 29043929

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Abstract

Aim: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD: pain, itching, sleeping difficulties, psychosis and tics. Materials & methods: A symptom survey was constructed using the online tool Qualtrics and dispersed to JHD caregivers through websites. Results: A total of 33 surveys were completed. Disrupted sleep was the most prevalent symptom (87%), followed by tics (78%), pain (69%), itching (60%) and psychosis (39%). Conclusion: Despite limitations, the study supports that there are symptoms in the JHD population that are not considered classic, however, are common and significant for patients and caregivers.

Details

Title: Subtitle: A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease
Creators: Amelia D Moser - Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Eric Epping - Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Patricia Espe-Pfeifer - Departments of Psychiatry & Pediatrics, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Erin Martin - Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Leah Zhorne - Departments of Pediatrics & Neurology, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Katherine Mathews - Departments of Pediatrics & Neurology, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Martha Nance - Struthers Parkinson's Center, Minneapolis, MN, USA
Denise Hudgell - Help4HD International, Santa Maria, CA, USA
Oliver Quarrell - Department of Clinical Genetics, Sheffield Children's Hospital, Sheffield, UK
Peg Nopoulos - Departments of Psychiatry, Pediatrics, & Neurology, University of Iowa Carver College of Medicine, Iowa City, IA, USA
Resource Type: Journal article
Publication Details: Neurodegenerative disease management, Vol.7(5), pp.307-315
DOI: 10.2217/nmt-2017-0019
PMID: 29043929
NLM abbreviation: Neurodegener Dis Manag
ISSN: 1758-2024
eISSN: 1758-2032
Language: English
Date published: 10/2017
Academic Unit: Neurology; Psychiatry; Stead Family Department of Pediatrics; Iowa Neuroscience Institute; Neurology (Pediatrics)
Record Identifier: 9984003973802771

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