Personal Factors Associated with Reported Benefits of Huntington Disease Family History or Genetic Testing
| Autor: | Andrew R. Juhl, Bradley G. Brossman, Janet K. Williams, James A. Mills, Cheryl Erwin, Jane S. Paulsen |
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| Rok vydání: | 2010 |
| Předmět: |
Adult
Male Risk Gerontology Time Factors media_common.quotation_subject Genetic counseling Decision Making Self-concept Genetic Counseling Disease Social support Optimism Child of Impaired Parents Adaptation Psychological medicine Humans Genetic Predisposition to Disease Spirituality Genetic Testing Family history Child Genetics (clinical) media_common Genetic testing Family Health medicine.diagnostic_test Social Support Original Articles General Medicine Middle Aged Self Concept Huntington Disease Knowledge Patient Satisfaction Female Psychology Prejudice |
| Zdroj: | Genetic Testing and Molecular Biomarkers. 14:629-636 |
| ISSN: | 1945-0257 1945-0265 |
| DOI: | 10.1089/gtmb.2010.0065 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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