Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation

Abstract

The aim of the study was to evaluate the impact of a decision aid (DA) and its timing in women being tested for a BRCA1/2 mutation. Women with and without a previous history of cancer were included after blood sampling for genetic testing. The DA consisted of a brochure and video providing information on screening and prophylactic surgery. To evaluate the impact of the DA, women were randomised to the DA group (n ¼ 184), receiving the DA 2 weeks after blood sampling, or to the control group (n ¼ 184). To evaluate the impact of timing, mutation carriers who had received the DA before the test result (n ¼ 47) were compared to mutation carriers who received the DA after the test result (n ¼ 42). Data were collected on well-being, treatment choice, decision and information related outcomes. The impact of the DA was measured 4 weeks after blood sampling. The impact of timing was measured 2 weeks after a positive test result. The DA had no impact on well-being. Regarding decision related outcomes, the DA group more frequently considered prophylactic surgery (P ¼ 0.02) corroborated with higher valuations (P ¼ 0.04). No differences were found for the other decision related outcomes. Regarding information related outcomes, the DA group felt better informed (P ¼ 0.00), was more satisfied with the information (P ¼ 0.00), and showed more accurate risk perceptions. Timing of the DA had no effect on any of the outcomes. No interactions were found between the DA and history of cancer. In conclusion, women being tested for a BRCA1/2 mutation benefit from the DA on information related outcomes. Because timing had no effect, the DA is considered useful either before or after the test result.

Psychiatric implications of cancer genetic testing

“…Several studies suggest using cancer genetic testing decision aids before testing to better inform patients about testing and to assure that they have more accurate risk perceptions. [115][116][117][118] An example of a decision aid used before cancer genetic testing is the computer program "Breast Cancer Risk and Genetic Testing," which is a CD-ROM-based program designed to educate women about breast cancer, heredity, and the benefits and limitations of genetic testing. Users reported that this program was easy to use and provided beneficial educational information before the genetic counseling session, thus allowing the genetic counselors to spend more time discussing specific individual risks and specific psychological concerns.…”

The decision evaluation scales

“…Original study aims and detailed methods have been published elsewhere [21,22]. Questionnaires were sent at baseline, T1, that is after blood sampling to test for a BRCA1/2 mutation, at T2, 4 weeks after blood sampling, at T3, 2 weeks after a positive test result and at T4, 3 months after a positive test result.…”

“…Questionnaires were sent at baseline, T1, that is after blood sampling to test for a BRCA1/2 mutation, at T2, 4 weeks after blood sampling, at T3, 2 weeks after a positive test result and at T4, 3 months after a positive test result. Half of the women received a video and brochure [21], dealing with the decision between prophylactic surgery or screening for breast/ovarian cancer, 2 weeks after the blood sample, together with a follow-up questionnaire to evaluate this information. The outcome measures have been decribed in full detail [21,22].…”

“…Half of the women received a video and brochure [21], dealing with the decision between prophylactic surgery or screening for breast/ovarian cancer, 2 weeks after the blood sample, together with a follow-up questionnaire to evaluate this information. The outcome measures have been decribed in full detail [21,22]. A brief summary is given below.…”

Impact of a Randomized Controlled Educational Trial to Improve Physician Practice Behaviors Around Screening for Inherited Breast Cancer

“…18 Various interventions aimed at increasing patient knowledge have been shown to be effective. [19][20][21][22][23][24][25] That said, there are few educational interventions focusing on hereditary breast cancer that target physicians or trainees. 26 Here, we report an evaluation of an interactive web-based genetics curriculum for PCPs using announced standardized patient (SP) visits.…”