Breast Cancer Survivors' Knowledge of Hereditary Breast and Ovarian Cancer following Genetic Counseling: An Exploration of General and Survivor-Specific Knowledge Items

Abstract

Background: Previous studies found genetic counseling increased participants' knowledge about hereditary breast and ovarian cancer (HBOC). However, most explored knowledge gain in unaffected women and the scale most commonly used does not include items that may be more pertinent to breast cancer (BC) survivors. Aims: To explore whether genetic counseling impacts BC survivors' knowledge about HBOC and BC survivor-specific information. Methods: The National Center for Human Genome Research Knowledge Scale and 5 additional items specific to BC survivors were tested among BC survivors; before genetic counseling (time 1), 2-3 weeks after genetic counseling (time 2), and 6 months following genetic counseling (time 3). Results: A statistically significant change in knowledge over time was found. Post hoc analyses revealed statistically significant increases in knowledge between time 1 (median = 7.00) and time 2 (median = 10.00; p < 0.005), and between time 1 and time 3 (median = 9.00; p < 0.005). Conclusion: Knowledge increased following genetic counseling, but the highest total average score at any time was <70% out of 100%. Additional analyses revealed items with low rates of correct response at all three time points, raising several concerns and the consideration of alternative approaches to measuring knowledge.

Communication about genetic testing with breast and ovarian cancer patients: a scoping review

“…The only counselling information that directly predicted counsellees’ perceptions and indirectly predicted outcomes were the DNA test result, the risk for the patient and the risk for her relativesGleeson et al [17]To identify information and communication preferences about genetic testing shortly after diagnosis for women with ovarian cancer22 ovarian cancer patientsSemi-structured qualitative interviewsPatients expressed a preference for brief, positive, hope-giving information without statistics early in their diagnosisSie et al [43]To compare experiences of patients receiving pre-test information via written/digital formats with usual care161 breast cancer patients; trial group ( n = 95), usual care group ( n = 66)SurveyThere were no differences in satisfaction, psychological distress, quality of life, breast cancer worry and risk perception for further cancer between groupsJacobs et al [33]To compare the accuracy of information recall amongst patients and relatives following genetic counselling32 participants - 10 breast and ovarian cancer patients and 22 of their at-risk relativesAnalysis of audiotaped genetic counselling consultations and post consultation interviews71% of the information communicated during genetic counselling to cancer patients was about hereditary cancer management. Cancer patients accurately recalled 53% of the informationScherr et al [29]To explore the impact of genetic counselling on breast cancer survivors’ knowledge about hereditary cancer over time103 breast cancer patients; counselled before surgery ( n = 16), counselled after surgery ( n = 87)Longitudinal surveyThe knowledge gained following pre-test genetic counselling was not retained at 6 monthsQuinn et al [32]To evaluate the efficacy of an educational pamphlet in preparing women for decision-making about genetic testing136 breast cancer patients; Trial group ( n = 66), controls ( n = 70)Randomised controlled non-inferiority trial, longitudinal surveyThere were no differences between the groups for variance in knowledge and psychological outcomesAugestad et al [41]To explore experiences of women with newly diagnosed cancer following genetic testing after written information only17 breast and ovarian cancer patientsSemi-structured focus group interviewsThe experience was shocking, distressing and overwhelmingBenusiglio et al [30]To evaluate group genetic counselling210 breast and ovarian cancer patientsLongitudinal surveyKnowledge and satisfaction were increased over timeBredart et al [28]To investigate the impact of genetic knowledge on feelings of personal control243 breast cancer patientsLongitudinal surveyBreast cancer knowledge was not retained at post-test genetic counsellingJacobs et al […”

“…Of these, three articles were from the same study from the Netherlands [24–26]. Significant increase in knowledge was reported following pre-test communication by face-to-face genetic counselling [23, 27, 29], group education [28] and written communication [31, 32]. However, a significant reduction in hereditary cancer knowledge amongst breast cancer patients was identified between pre- and post-test genetic counselling [28, 29].…”

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors

“…Knowledge was assessed using a 9-item validated scale developed for the current study and informed by our prior work [14, 21, 25]. Participants were asked to indicate their responses to statements such as, “I can only have genetic counseling if I know my family’s health history” using “true,” “false,” or “don’t know.” Participants were given 1 point for each correct response and items were summed to create an overall knowledge score (range: 0–9).…”

“…Knowledge was assessed using a 9‐item validated scale . Correct responses were summed to create an overall knowledge score (range: 0‐9).…”

“…Genetic counseling provides education and counseling about hereditary breast and ovarian cancer and the process, risk and benefits of genetic testing [12]. Studies found breast cancer patients who attend genetic counseling have increased knowledge about cancer genetics, improved risk perception accuracy, and reduced anxiety and cancer related distress [13, 14]. Although the patient is responsible for the decision to engage in a health care consultation, our team and others found patients chose not to attend genetic counseling based on incomplete knowledge (e.g., misperceptions about genetic counseling/testing processes), inaccurate health beliefs (e.g., perceived susceptibility, benefits or barriers), and psychosocial factors (e.g., feeling overwhelmed with the cancer diagnosis) [8, 15–17].…”