As genetics continue to play a major role in gynecologic cancer treatment, it is imperative that patients understand its implications. Nurses can be key in educating patients and dispelling any myths and misconceptions that they may have.
A recent study presented at the 2020 ONS Bridge virtual conference analyzed patients’ understanding of cancer in the world of oncology. Study author Rachel Pozzar, PhD, RN, of the Dana-Farber Cancer Institute, recently discussed her team’s findings with Oncology Nursing News.
Oncology Nursing News: Can you explain your study and its significance?
Pozzar: This was a secondary analysis of data collected as part of a larger study, led by Meghan Underhill-Blazey, PhD, APRN, AOCNS, that assessed the experiences of breast and gynecologic cancer survivors who underwent genetic counseling and multigene panel testing. The purpose of this study was to better understand knowledge of cancer genetics among participants with a primary diagnosis of ovarian cancer.
Knowledge of cancer genetics in this population is an important topic because more than 20% of ovarian cancer cases are associated with an inherited pathogenic variant. From prior research, we know that individuals who are confident in their knowledge of cancer genetics are more likely to share their genetic test results with relatives. In turn, these relatives may benefit from genetic testing and certain risk-reducing interventions.
What were the main findings?
One of our main findings was that participants who scored below the sample average on our measure of cancer genetics knowledge expressed interest in face-to-face results disclosure, visual learning aids, and simplified language in written and verbal communication. We also found that older age was significantly associated with lower cancer genetics knowledge, which is important because older adults may serve as a resource for family members who seek information about their family's health history.
Are there misconceptions or gaps in knowledge for patients with ovarian cancer when it comes to genetics? Why?
One important gap in knowledge we observed was that only about half of participants were aware that female-specific cancer risk, such as for ovarian cancer, can be inherited from either the father or the mother. Similarly, fewer than half of participants were aware that people with an inherited risk for cancer may get cancer at a younger age, or that they may be at risk for more than one type of cancer. These misconceptions are likely common because the principles of cancer genetics are complex, and the field is rapidly evolving.
What role does the oncology nurse play in educating patients and their families?
The findings of this study highlight the need for nurses and other clinicians to ensure that the language and materials they use to educate patients is clear, free of jargon, and perhaps supported by a visual aid. Although genetic counselors provide much of the initial education that takes place prior to genetic testing, nurses can reinforce this teaching, identify unmet learning needs, and help the patient identify reliable sources of cancer genetics information.
What are the next steps in this line of research? Are there any unanswered questions?
The results of this study highlight the role of patient-provider communication in cancer genetics education. My broader program of research is focused on promoting patient-provider communication that meets patients’ unique needs and preferences—what is often called “patient-centered communication.” Research suggests patient-centered communication has the potential to promote knowledge retention and to prompt family conversations about hereditary cancer risk.
One priority for nurse scientists is to develop and test strategies that promote patient-centered communication in the ovarian cancer care setting. As nurses, it’s crucial for us to ensure that all patients, regardless of age or diagnosis, understand what their genetic test results mean for themselves and their families.
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