Patient motivation, satisfaction, and coping in genetic counseling and testing for BRCA1 and BRCA2

Shelly Clark, Leslie G. Bluman, Nancy Borstelmann, Katherine Regan, Eric P. Winer, Barbara K. Rimer, Celette Sugg Skinner

Research output: Contribution to journalArticlepeer-review

39 Scopus citations

Abstract

Women with a strong family history of breast and/or ovarian cancer can now have genetic testing, that may identify mutations associated with increased cancer predisposition. Within the context of a clinical trial evaluating printed educational materials, we examined motivation, satisfaction, coping, and perceptions of genetic counseling and testing among 159 women who underwent pretest counseling and made a testing decision. Ninety-six percent of the participants elected to have BRCA1/2 testing. When making a decision about genetic testing, study participants were concerned less about the potential negative effects that could result from testing than the potential benefits. After counseling, participants said that they felt better able to make decisions that were right for them and that their questions and concerns were adequately addressed during the session. Ninety- five percent of the women were satisfied with their test decision. Participants used a range of strategies to cope with thoughts and feelings about cancer and/or genetic testing immediately following test decision. Results suggest that the genetic counseling session helped women make decisions about testing for BRCA1 and BRCA2, even in the setting of a trial in which all women also received detailed educational materials. Further, the results indicate that future research focusing on perceptions of risks and benefits of testing and of coping strategies immediately following test decision may be warranted.

Original languageEnglish (US)
Pages (from-to)219-235
Number of pages17
JournalJournal of Genetic Counseling
Volume9
Issue number3
DOIs
StatePublished - 2000

Keywords

  • BRCA 1
  • Breast cancer
  • Coping
  • Genetic counseling
  • Motivation
  • Satisfaction

ASJC Scopus subject areas

  • Genetics(clinical)

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