How We Developed Our Decision Aid for Women with a Pathogenic BRCA1/2 Mutation
Women with pathogenic BRCA1/2 mutations may find it difficult and stressful making decisions aimed to mitigate the risk of cancer.
The BRCA Decision Aid, a decision aid that facilitates shared decision-making in women without cancer who have a pathogenic germline mutation in BRCA1 or BRCA2 was developed and pilot tested by researchers at The Phyllis F. Cantor Center for Research in Nursing and Patient Care Services at the Dana Farber Cancer Institute in Boston, Massachusetts. The development process for this decision aid is described in an article published in the Journal of Cancer Education.
“The complexity of decision making lies in analyzing cancer risk and survival along with the consequences of risk management choices, such as surgical menopause, infertility, body image changes, and anxiety. Decisions necessitate a complex personal analysis of issues and many change over the time,” the authors wrote.
The BRCA Decision Aid was developed to supplement clinician advice, help patients prepare for clinical visits, and engage clinicians and patients to jointly reach decisions that are consistent with the individual preferences of women who are carriers of pathogenic BRCA1/2 mutations.
A four-step process was followed in developing the tool:
• Step 1 Determine the purpose, aims, target audience, and scope of project by a steering committee of nurse researchers;
• Step 2 Conduct a thorough review of relevant clinical guidelines, decision aids, and other related literature and the development of a prototype tool;
• Step 3 Conduct a pilot test of the prototype tool in 2 separate groups: a small group of clinicians, including genetic counsellors and advanced practice nurses, and a convenience sampling of potential end users;
• Step 4 Steering committee modified the decision aid based on user feedback.
The BRCA Decision Aid was written at a ninth-grade reading level, and the majority of end users surveyed rated the tool as good or excellent in all categories, including organization, usefulness and comprehensiveness. The authors plan to make a downloadable, paper version of the tool available online following further research.
Jabaley T, Underhill-Blazey ML, Berry DL. Development and testing of a decision aid for unaffected women with a BRCA1 or BRCA2 mutation [published online January 19, 2019]. J Cancer Educ.doi: 10.1007/s13187-019-1470-9