Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions

Rebecca E. Ready; Justin J. F. O'Rourke; Jane S. Paulsen

doi:10.1155/2011/958439

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Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions

Journal article

Open access

Peer reviewed

Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions

Rebecca E. Ready, Justin J. F. O'Rourke and Jane S. Paulsen

Neurology research international, Vol.2011, pp.1-7

01/01/2011

DOI: 10.1155/2011/958439

PMCID: PMC3142873

PMID: 21822491

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Abstract

Persons who are at risk for Huntington's Disease (HD) can be tested for the HD gene expansion before symptom onset. People with the gene expansion, but no clinical diagnosis, are in the prodromal phase of HD. This study explored quality of life (QOL) in prodromal HD. Interviews about QOL, conducted with 9 prodromal HD participants and 6 companions, were transcribed. Discourse was coded for emotional valence, content (e.g., coping, spirituality, interpersonal relationships, HD in others, and employment), and time frame (e.g., current, past, and future). Respondents were more positive than negative about the present, which was their major focus. The most common statements were about positive attitudes. Positive statements were made about spirituality, and negative statements were made about HD in other people. Relationships, employment, and coping with HD reflected both positivity and negativity. Participants and companions spoke of the future with different concerns. Applicability of findings to the clinical management of HD are discussed.

Details

Title: Subtitle: Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions
Creators: Rebecca E. Ready - University of Massachusetts Amherst
Justin J. F. O'Rourke - Department of Psychiatry, The University of Iowa, Iowa City, IA 52242, USA
Jane S. Paulsen - Department of Psychiatry, The University of Iowa, Iowa City, IA 52242, USA
Resource Type: Journal article
Publication Details: Neurology research international, Vol.2011, pp.1-7
DOI: 10.1155/2011/958439
PMID: 21822491
PMCID: PMC3142873
NLM abbreviation: Neurol Res Int
ISSN: 2090-1852
eISSN: 2090-1860
Grant note: DOI: 10.13039/100000065, name: National Institute of Neurological Disorders and Stroke, award: NS040068
Language: English
Date published: 01/01/2011
Academic Unit: Psychiatry; Psychological and Brain Sciences
Record Identifier: 9984383303602771

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