ORLANDO, FL—Four major themes characterize the experience of cancer risk management for women who are positive for BRCA genetic mutations: the early previvor experience (intense emotional upheaval), the decisional journey (navigating a personal plan for survival), lack of knowledge and experience among health care providers, and that support is essential, a study presented at the ONS 40th Annual Congress has found.
“Women with pathogenic BRCA genetic mutations face dramatically higher risks than the general population for development of breast and ovarian cancer over their lifetime,” said Terri Jabaley, PhD, RN, of Emmanuel College in Boston, Massachusetts.
“Emerging research continues to refine the clinical and psychosocial factors applicable to cancer risk management decision making. Current options for BRCA-positive women have life-altering implications.”
The qualitative study, which used a phenomenological design, “explored the experience of cancer risk management decision making for women who are unaffected carriers of a BRCA mutation,” or previvors.
The study recruited a convenience sample of 15 previvors through Facing our Risk of Cancer Empowered (FORCE), an online informational and support group. After obtaining informed consent, interviews were audiotaped.
Nine were interviewed in person and six were interviewed on the telephone. The final sample included women from the United States and Canada.
“Twenty percent reported no initial counseling on diagnosis with a BRCA mutation. That was troubling,” Jabaley noted.
Younger BRCA-positive patients were more likely to consider and plan for the future, while older women felt pressure that they would develop cancer soon.
“Findings highlight the different decisional perspectives of previvors based on age and individual factors and the need for increased resources and competence among health care providers, particularly in rural communities,” Jabaley said. “This study provides valuable insight into the decisional journey for previvors.”
Jabaley recommended that positive genetic test results be given in person, counseling and support be given throughout the cancer risk management decision making process, and there needs to be increased education and specialization in genomics among nurses and other health care providers. “Support for previvors is essential,” she concluded.
Increasing numbers of women who are BRCA-positive are being identified, due to advancements in genetic testing, increased availability, and decreased testing costs.
Underwriting or funding source was the Pi Epsilon at Large chapter of Sigma Theta Tau International Honor Society for Nursing provided funding for the study.