Patients with Ovarian Cancer Suggest Using Visual Learning Aids and Simplified Language to Better Help Them Understand Genetic Testing and Counseling

Around 20% of ovarian cancer cases occur as a result of an inherited genetic mutation, which, according to experts, highlights the need to identify individuals for whom targeted therapy or ovarian cancer risk-reducing interventions may be beneficial.

“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,” said Rachel Pozzar, a post-doctoral research fellow at Dana-Farber Cancer Institute in Boston. “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.”

Together with her colleagues, Pozzar, who holds a post doctorate degree in nursing science, conducted a secondary analysis of a cross-sectional survey to better understand knowledge of cancer genetics among individuals with a primary diagnosis of ovarian cancer. The results of this analysis were presented at the 2020 ONS Bridge Virtual Meeting.

Patients were eligible for this analysis if they had a primary diagnosis of ovarian cancer and received genetic counseling and testing between January 2016 and October 2017. Using the KnowGene scale, Pozzar and colleagues assessed patients’ cancer genetics knowledge. Patients were also asked open-ended survey questions to help the researchers identify ways to improve the genetic testing and counseling process.

Eighty-six patients were included in this analysis. Their mean age was 65.8 years. Out of a possible score of 19, the mean knowledge score of the patients was 11.9. The data also demonstrated that a patient’s age, income and education were significantly associated with knowledge of genetic testing. Patients who were younger and patients who had a higher education were more likely to have an increased knowledge of cancer genetics, according to results of multivariate analyses.

Responses from the open-ended survey showed that patients found it challenging to relate to complex language in verbal and written explanations of genetic test results.

“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,” said Pozzar. “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.”

Pozzar notes that the results of the study emphasize the importance of patient-provider communication when discussing cancer genetics.

“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,’” Pozzar concluded. “Research suggests patient-centered communication has the potential to promote knowledge retention and to prompt family conversations about hereditary cancer risk.”