Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD

Janet Williams; Nancy Downing; Anthony L Vaccarino; Mark Guttman; Jane S Paulsen

doi:10.1371/currents.RRN1254

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Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD

Journal article

Open access

Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD

Janet Williams, Nancy Downing, Anthony L Vaccarino, Mark Guttman and Jane S Paulsen

PLoS currents, Vol.3, pp.RRN1254-RRN1254

2011

DOI: 10.1371/currents.RRN1254

PMCID: PMC3154838

PMID: 21901173

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Abstract

Day-to-day functioning is a component of health-related quality of life and is an important end point for therapies to treat Huntington Disease (HD). Specific areas of day-to-day function changes have not been reported for prodromal or very early stages of HD. An exploratory self-report telephone interview was conducted with sixteen people with prodromal HD or early HD who met criteria designed to capture research participants most near to motor diagnosis. All completed semi-structured interviews on function in nine aspects of day-to-day life. Out of 16, 14 reported changes in at least one area. All day-to-day function areas were endorsed by at least one participant with driving being the most common area endorsed by 11/16. Changes in ability to perform some day-to-day tasks are experienced by people who are close to the time of clinical diagnosis for HD. Functional ability is likely to be an important component of outcome assessments of clinical trials and in ongoing clinical management.

Huntington Disease

Details

Title: Subtitle: Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD
Creators: Janet Williams - University of Iowa, Nursing
Nancy Downing - University of Iowa
Anthony L Vaccarino
Mark Guttman - University of Toronto
Jane S Paulsen - University of Iowa, Psychological and Brain Sciences
Resource Type: Journal article
Publication Details: PLoS currents, Vol.3, pp.RRN1254-RRN1254
Publisher: Public Library of Science
DOI: 10.1371/currents.RRN1254
PMID: 21901173
PMCID: PMC3154838
eISSN: 2157-3999
Grant note: This research is supported by the National Institutes for Health, National Institute of Neurological Disorders and Stroke (NS40068) and CHDI Foundation, Inc.
Language: English
Date published: 2011
Academic Unit: Psychiatry; Psychological and Brain Sciences; Nursing
Record Identifier: 9983557612102771

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