Exploring Patient Perceptions and Misconceptions: Beliefs Regarding Hereditary Cancer

Many patients who enter a genetic counseling session have preconceived notions about why they or their family members developed a genetic condition. Often these perceptions are deeply rooted in personal, familial, and/ or cultural beliefs; individuals typically have a personal framework, or schema, into which they incorporate new information. There is limited research on what information patients are retaining during a genetic counseling session and how they are assimilating that knowledge into their existing views. We attempted to characterize these patient perceptions with respect to hereditary cancer, in order to assess how patients are adopting the information presented in a genetic counseling session into their current schemas. We conducted semi-structured interviews along with a true/false assessment with 18 female participants who have had genetic counseling due to a personal or family history of breast cancer. From these interviews, eight major themes emerged: 1) Those who have already had cancer thought their odds of developing the disease were low prior to their diagnosis, 2) Those who have not had cancer think their odds of developing the disease are very high, 3) Participants believe that lifestyle modifications are the best way to prevent cancer, 4) Participants, even those with known mutations, believe that their cancer was caused by lifestyle/ life events, 5) Patients put emphasis on information about risk estimate, 6) A main takeaway from genetic counseling is how a mutation can cause more than one type of cancer, 7) The majority of participants said that genetic counseling changed their perception of cancer, and 8) The change in perception was connected to gaining more information. Analysis of the True/Falseassessment showed that participants most frequently erroneously believed that hereditary cancer genes can “skip’ a generation and that everyone has a different set of genes. Incorporating these themes into a genetic counseling session can provide support and understanding about patient perceptions and facilitate a more effective genetic counseling experience