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J Nurs Scholarsh. 2009;41(3):276-83. doi: 10.1111/j.1547-5069.2009.01279.x.

Living with genetic test results for hereditary breast and ovarian cancer.

Author information

  • 1Department of Women, Children and Family Health Science, School of Nursing, University of Illinois at Chicago, IL 60612, USA. hamilr@uic.edu

Abstract

PURPOSE:

To examine adaptation by nonsymptomatic individuals who knew the results of a genetic test for hereditary breast and ovarian cancer (HBOC) for at least 4 years.

DESIGN:

Longitudinal grounded theory study.

METHODS:

Follow-up interviews after a 3- to 4-year interval were conducted by telephone or e-mail with seven asymptomatic participants originally recruited for an earlier study of genetic testing experiences. A total of 14 interviews, 2 for each participant were conducted. Conceptual analysis on these 14 interviews focused on impact on daily life and health behavior decisions made in the intervening years.

FINDINGS:

Participants described the impact of the result and adaptations made in relationships, sexuality, outlook, and plans for the future. Participants accepted recommended surveillance and preventative measures to maximize a healthy lifestyle and reported both the benefits of knowing their mutation status as well as challenges they had encountered since testing.

CONCLUSIONS:

Adaptation to living with genetic test results indicating a disease-related mutation is an ongoing process of balancing the knowledge of risk with living a normal life. Over time, awareness of genetic risk does not appear to diminish.

CLINICAL RELEVANCE:

Positive and negative long-term consequences of genetic testing for hereditary breast or ovarian cancer may influence many aspects of the personal lives and health care decisions of those tested.

PMID:
19723276
[PubMed - indexed for MEDLINE]
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