Communication and Information Needs of Women Diagnosed With Ovarian Cancer Regarding Treatment-Focused Genetic Testing

Margaret Gleeson

Bettina Meiser

Kristine Barlow-Stewart

Alison H. Trainer

Kathy Tucker

Kaaren Watts

Michael Friedlander

Nadine Kasparian

information, communication, genetic testing, genetics
ONF 2013, 40(3), 275-283. DOI: 10.1188/13.ONF.40-03AP

Purpose/Objectives: To identify women's information and communication preferences about treatment-focused genetic testing (TFGT) in the ovarian cancer context.

Research Approach: A qualitative interview study.

Setting: Two familial cancer services and a gynecologic oncology clinic at a major teaching hospital in Australia.

Participants: 22 women diagnosed with ovarian cancer who had either advanced disease and had previously undergone TFGT (n = 12) or had been diagnosed in the previous 6-20 weeks with ovarian cancer and had not undergone TFGT (n = 10).

Methodologic Approach: Participants were interviewed individually about actual and hypothetical views of TFGT. The interviews were transcribed and organized into themes using qualitative analysis software.

Findings: Most women wanted to be informed about TFGT prior to their surgery for ovarian cancer. The majority preferred to receive the information verbally; slightly more women preferred their medical oncologist to deliver the information compared to a genetic specialist or oncology nurse. Women preferred the focus of pretest information to be on them and their treatment.

Conclusions: Women diagnosed with ovarian cancer want information about genetic testing early with focus placed on the potential benefits of genetic testing on treatment.

Interpretation: The findings of this study provide much-needed guidance to oncology nurses and other oncology healthcare professionals about when, what, and how information about TFGT should be delivered to patients diagnosed with ovarian cancer. Supportive patient education materials now need to be developed to assist these women in making informed decisions about genetic testing.

Knowledge Translation: Knowing that women do want TFGT, how they want it presented and by whom, and the content and level of detail that women want means that TFGT can now be presented as an option to women newly diagnosed with ovarian cancer, which may influence firstline treatment. The findings also provide the knowledge required to prepare education tools to assist oncology nurses involved in frontline care.

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