Development and Pilot Testing of a Decision Aid for Men Considering Genetic Testing for Breast and/or Ovarian Cancer–Related Mutations (BRCA1/2)

Abstract

Despite the fact that both men and women can carry a breast/ovarian cancer-related mutation, the main emphasis in genetic counseling for breast/ovarian cancer-related risk remains on females. This study aimed to develop and pilot a decision aid specifically designed for men with a strong family history of breast and/or ovarian cancer who are considering genetic testing. The decision aid was developed by a multidisciplinary team of experts and a consumer representative. It was then reviewed by 27 men who had previously undergone genetic testing to identify a mutation in a BRCA1 or BRCA2 gene. All men who reviewed the decision aid indicated that they would recommend the booklet to other men in the same situation, and 96% of the sample (n = 26) reported being "very satisfied" or "satisfied" with the information contained in the decision aid. The decision aid was perceived by all participants as "very relevant" or "quite relevant" for men considering genetic testing. Ninety-three percent of men felt that it was easy to weigh the pros and cons of genetic testing with the help of the decision aid. The perceived impact on participants' emotions and understanding of the genetic testing process was also assessed. Several factors may hinder men from effectively weighing up the potential benefits and risks of genetic testing. A greater understanding of these issues may help health professionals to encourage men with a strong family history of breast and/or ovarian cancer to learn about cancer risk and the appropriate management strategies for themselves and their female relatives.

A follow‐up study on men tested for BRCA1/BRCA2 mutations: impacts and coping processes

“…Future research about male carriers of BRCA mutations should explore this possibility. A decision‐aid specifically designed for men considering genetic testing for breast cancer mutations is an example of useful interventions that healthcare professionals should be aware of.…”

BRCA1/2 genetic testing uptake and psychosocial outcomes in men

“…Despite the perception that BRCA1/2 genetic testing is relevant primarily for women, both men and women are equally likely to inherit a mutation [1, 2]. Women who inherit a BRCA1 or BRCA2 mutation face significantly elevated lifetime risks of breast and ovarian cancer (up to 65 and 40%, respectively), for which aggressive surveillance and surgical risk reduction options are recommended [3–5].…”

Development and Evaluation of an Information Booklet for Grandparents of Children With Cancer

“…2. Resource acceptability: Six questions were based on the validated O'Connor and Cranney (1996) User Manual Acceptability, which has been successfully used in prior resource evaluations (Juan et al, 2008).…”

“…Resource acceptability : Six questions were based on the validated O’Connor and Cranney (1996) User Manual Acceptability , which has been successfully used in prior resource evaluations (Juan et al, 2008). Grandparents were asked to rate each section of the booklet on a 4-point scale (1 = poor to 4 = excellent ).…”