Title

Personal factors associated with reported benefits of Huntington disease family history or genetic testing

Document Type

Article

Peer Reviewed

1

Publication Date

10-1-2010

Journal/Book/Conference Title

Genetic testing and molecular biomarkers

Volume

14

NLM Title Abbreviation

Genet Test Mol Biomarkers

DOI

10.1089/gtmb.2010.0065

PubMed ID

20722493

Abstract

AIMS: A family history of Huntington disease (HD) or receiving results of HD predictive genetic testing can influence individual well-being, family relationships, and social interactions in positive and negative ways. The aim of this study was to examine benefits reported by people with an HD family history or those who have undergone predictive HD testing, as well as the personal variables associated with perceived benefits. METHODS: Seventy-four of 433 people completing the International Response of a Sample Population to HD risk (I-RESPOND-HD) survey reported benefits. Knowledge and understanding was perceived as the most common benefit from participants in both groups. The next most frequent perceived benefits from a family history were connecting with others and achieving life meaning and insights. The next most common perceived benefits from genetic testing were life planning and social support. The least common perceived benefit for both groups was renewed hope and optimism. Older age and spirituality were significantly associated with benefits in both groups. CONCLUSIONS: Perceptions of benefit may not be as likely until later years in people with prodromal HD. A developed sense of spirituality is identified as a personal resource associated with the perception of benefit from genetic testing for HD. Associations among spirituality, perceived benefits, and other indicators of personal and family well-being may be useful in genetic counseling and health care of people with prodromal HD.

Keywords

Adaptation, Psychological, Adult, Child, Child of Impaired Parents/psychology, Decision Making, Family Health, Female, Genetic Counseling, Genetic Predisposition to Disease/psychology, Genetic Testing/psychology, Humans, Huntington Disease/diagnosis/psychology, Knowledge, Male, Middle Aged, Patient Satisfaction, Prejudice, Risk, Self Concept, Social Support, Spirituality, Time Factors



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URL

http://ir.uiowa.edu/nursing_pubs/1447