Mental health and quality of life after genetic testing for Huntington disease: a long-term effect study in Germany

Licklederer, Claudia; Wolff, Gerhard; Barth, Jürgen (2008). Mental health and quality of life after genetic testing for Huntington disease: a long-term effect study in Germany. American journal of medical genetics. Part A, 146A(16), pp. 2078-2085. Hoboken, N.J.: Wiley-Liss 10.1002/ajmg.a.32423

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Predictive genetic testing for Huntington disease (HD) might cause severe short-term psychological reactions in patients with poor mental health. Very few studies exist on the long-term effects of genetic HD testing. The aim of this study was to assess mental health and quality of life in persons who were tested for HD mutation, to compare mental health depending on the result of the genetic test (non-carriers, gene carriers, and patients with HD) and to identify predictors of mental health and quality of life via linear regression. The data were collected by self-report questionnaires. In total, 121 individuals participated in this study: 52 were non-carriers, 54 were gene carriers, and 15 were gene carriers suffering from HD. Non-carriers and gene carriers showed better mental health and quality of life than HD-patients but did not differ from each other. In non-carriers four variables predicted increased depression and low mental quality of life: low perceived social support, no intimate relationship, female sex and younger age. For gene carriers three predictors were found: low perceived social support, the expectation of an unfavorable genetic test result before the testing procedure and being childless. To prevent detrimental effects of HD testing on mental health and mental quality of life, specific attention should be paid to persons with limited social networks during genetic counseling. Assessment of expectations related to the test result and mental health prior to a genetic testing procedure may help to identify gene carriers at risk of poor coping after an unfavorable test result.

Item Type:

Journal Article (Further Contribution)

Division/Institute:

04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

UniBE Contributor:

Barth, Jürgen

ISSN:

1552-4825

ISBN:

18627060

Publisher:

Wiley-Liss

Language:

English

Submitter:

Factscience Import

Date Deposited:

04 Oct 2013 15:03

Last Modified:

05 Dec 2022 14:19

Publisher DOI:

10.1002/ajmg.a.32423

PubMed ID:

18627060

Web of Science ID:

000258477100005

BORIS DOI:

10.7892/boris.27361

URI:

https://boris.unibe.ch/id/eprint/27361 (FactScience: 106453)

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