When a woman learns she carries a BRCA gene mutation—and thus, in her lifetime, faces an 87% risk of developing breast cancer and a 63% risk of getting ovarian cancer—she has a difficult decision-making process ahead of her.
Should she undergo life-changing preventive surgery, such as mastectomy or oophorectomy, and, if so, when? Should she try chemoprevention or stick with intensive surveillance and the “what ifs” that can come with a less aggressive prevention path? How can a woman even weigh all the clinical variables against life-stage issues and preferences while feeling overwhelmed with an urgency to take action?
One expert nurse, Terri Jabaley, PhD, RN, believes there has been a lack of support in this decision-making process, and that more help should be provided to women at this difficult moment. That’s why Jabaley, a clinical inquiry specialist at the Cantor Center for Nursing and Patient Care Research at Dana-Farber Cancer Institute in Boston, created an easy-to-understand guide that explains all options and their pros and cons, for use by oncology nurses working with BRCA mutation carriers who do not have cancer—previvors.
Jabaley presented information about the guide during the Oncology Nursing Society 43rd Annual Congress, held May 17-20 in Washington, DC.
“Current decision support resources have limitations,” she wrote in an abstract. “Clinical guidelines are written at a post-graduate reading comprehension level and require specialized knowledge for understanding. Resources do not address all options available to unaffected carriers, or exclude psychosocial issues impacting the decisional process. The purpose of this study was to develop and test a patient-focused, evidence-based, comprehensive decision aid at the 9th grade reading level, consistent with clinical guidelines for unaffected BRCA mutation carriers (previvors).”
The decision aid was developed by a steering committee of 7 nurse experts and evaluated by 23 participants: 8 experts, including healthcare providers and genetic counselors, and 15 previvors recruited from the patient advocacy group Facing our Risk of Cancer Empowered. The previvors had a mean age of 48.5 years, and their mean time since diagnosis was 5.2 years.
For each preventive option, the aid offers a list of pros and cons and allows users to rank each item with a score according to its importance to them. This can help previvors understand their own preferences, in preparation for discussions with their doctors.
The test run of the decision aid collected quantitative and qualitative data. On a 4-point scale ranking the survey from poor to excellent for organization, clarity, usefulness, comprehensiveness, and ease of understanding—with 4 being the best—expert reviewers gave mean scores of 3.63 or higher and previvors gave scores of 3.31 or higher. Experts all gave scores of 4.0 when ranking the relevance of each section of the decision aid, while previvors gave the decision aid scores of 3.36 or higher for relevance.
Comments from reviewers made it clear why the decision aid could be helpful in practice.
Jabaley said that expert reviewers liked the guide because it made it easier for them to explain comprehensive and complex information, and helped keep patients at the center of the decision-making process.
"Please send me the final version to use in the clinic; we have nothing," one expert reviewer wrote.
Previvors thought it would be valuable to share the guide with their families. “It’s all very important and relevant to me,” one said of the resource’s content.
Some previvors who tested the aid said it accomplishes something rare by explaining chemoprevention, which their doctors had not mentioned to them; some of the doctors, focused on breast health, had also failed to mention oophorectomy as an option, Jabaley said.
“Findings from this study suggest that the decision aid is comprehensive, well-organized, useful, and relevant to the cancer risk-management decision-making process of previvors,” Jabaley wrote. “Oncology nurses have an opportunity to improve the quality and integration of care among physicians, genetic counselors, and nurses by initiating a patient-centered approach through use of the decision aid. The aid prompts consideration of individual values, characteristics and preferences, and supports collaboration of the multidisciplinary team in caring for previvors.”
Next, beta testing will need to be done to measure the feasibility of the guide’s use in practice, Jabaley said.
In the meantime, the guide is already available online at www.brcadecisionaid.com
, and nurses and their patients are invited to use it and offer feedback.
Jabaley T. A patient-centered decision aid for previvors. Presented at: ONS 43rd Annual Congress; May 17-20, 2018; Washington, DC. https://ons.confex.com/ons/2018/meetingapp.cgi/Paper/2733