Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study

Abstract

Objectives: To describe women's information needs prior to genetic counselling for familial breast or ovarian cancer. Design: Prospective study including semistructured telephone interviews before genetic counselling, observations of consultations, completion of postal questionnaires, and face-to face interviews within two months of counselling. Subjects: 46 women attending genetic counselling for familial breast or ovarian cancer. Main outcome measures: Subjects' understanding of process and content of genetic counselling before attending and attitudes about their preparation for the counselling session. Results: Although all women interviewed before the clinic expected to discuss their risk of developing cancer and risk management options, there was evidence of a lack of knowledge about the process and content of genetic counselling; 17 (37%) women said they did not know what else would happen. Most women interviewed after counselling viewed it positively, but 26 (65%) felt they had been inadequately prepared and 11 (28%) felt that their lack of preparation meant that they could not be given an accurate estimation of their risk of cancer. Conclusions: Some women felt that they did not obtain optimum benefit from genetic counselling because they were inadequately prepared for it. We suggest that cancer family history clinics should provide women with written information about the process and content of genetic counselling before their clinic attendance. ▪. Genetic services are coming under increasing pressure as more women are referred for genetic counselling because of a family history of breast or ovarian cancer ▪. We interviewed women before and after they attended genetic counselling to find their views of the process ▪. All women interviewed before the clinic expected to discuss their risk of developing cancer and options for risk management, but many said they did not know what else would happen ▪. Women interviewed after counselling generally viewed it positively, but most felt they had been inadequately prepared and some felt that their lack of preparation meant that they could not get an accurate estimation of their risk of cancer ▪. Women need information about genetic counselling before they attend the clinic so that they are adequately prepared, and a written leaflet describing the process and explaining some basic genetic facts could be a cost effective means of providing this