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Getting to the Point: What Women Newly Diagnosed With Breast Cancer Want to Know About Treatment-Focused Genetic Testing

Bettina Meiser
Margaret Gleeson
Kaaren Watts
Michelle Peate
Elvira Zilliacus
Kristine Barlow-Stewart
Christobel Saunders
Gillian Mitchell
Judy Kirk
ONF 2012, 39(2), E101-E111 DOI: 10.1188/12.ONF.E101-E111

Purpose/Objectives: To identify young women's information preferences regarding treatment-focused genetic testing (TFGT) and to develop and evaluate a novel educational resource.

Research Approach: Qualitative interview study and pilot testing of a novel resource.

Setting: Two familial cancer services and one outpatient oncology clinic in Sydney and Melbourne, Australia.

Participants: 26 women with breast cancer aged 50 years and younger who either previously had TFGT (n = 14) or had a diagnosis of breast cancer within the previous 6-12 months.

Methodologic Approach: Participants were asked about their views of TFGT in semistructured interviews. A brief pamphlet on TFGT then was developed and pilot tested with 17 of the 26 women.

Main Research Variables: Women's attitudes and preferences with regard to timing, mode of delivery, and amount and format of information regarding TFGT were explored.

Findings: Most women wanted to be informed about TFGT at or around the time of their cancer diagnosis via a face-to-face consultation. No clear preference existed for which type of healthcare professional should provide information on TFGT. Brief written information about TFGT was viewed as important supporting material. The educational resource developed was well received.

Conclusions: The potential for more widespread TFGT in the future indicates a need for patient educational materials that enable women to make informed choices about TFGT. This pilot study has provided timely initial evidence on the efficacy of a brief written resource in preparing women for decision making about TFGT.

Interpretation: The resource developed in this study will assist oncology nurses to make important genetic risk information available to women newly diagnosed with breast cancer at a stressful time.

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