Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk

Abstract

Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual's experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women's cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.

Decision making for breast cancer prevention among women at elevated risk

“…The difficulty of prevention and surveillance choices for women at elevated risk likely reflects a range of normal cognitive patterns described by Daniel Kahneman, wherein intuitive and emotional decision making, shaped by personal experiences and instincts, is usually dominant over the conscious, analytic style of decision making. High-risk women report actively striving to make careful, deliberative breast cancer prevention decisions, but the cognitive dominance of the more reflexive decision-making mode may make this exceptionally difficult unless women have access to both thorough information and the cognitive skills necessary to process it [164]. Hesse-Biber and An further describe how prevention decision making in BRCA mutation carriers involves filtering genetic information through a complex framework of diverse psychological, social, and emotional factors [165].…”

“…Decisions can be changed or delayed by fear of surgery or side effects [67, 159]. Women’s decisions are also shaped by aspirations for their future (e.g., desire to have children), predictions about future emotions, perceived control over health, self-worth, experiences in high-risk families, risk fatigue, and cancer-related stigma [28, 97, 159, 164, 179]. Affective influences merit more thorough attention, and socio-emotional factors so far absent from the academic literature may also exert powerful influence on women’s decisions [164].…”

“…Women’s decisions are also shaped by aspirations for their future (e.g., desire to have children), predictions about future emotions, perceived control over health, self-worth, experiences in high-risk families, risk fatigue, and cancer-related stigma [28, 97, 159, 164, 179]. Affective influences merit more thorough attention, and socio-emotional factors so far absent from the academic literature may also exert powerful influence on women’s decisions [164]. For instance, the broad body of research on patient-centered care, anecdotal news reports, and comments posted in online support communities all indicate that the desire to take control of one’s health can be a profound, but as-yet unstudied, part of the decision-making journey for women facing elevated risk of breast cancer [131, 180].…”

Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information need

“…Women with VUS results in the BRCA1/2 tend to have higher distress and difficulty in communicating their results to family members compared to those with positive or negative outcomes (Cypowyj et al, ; O'Neill et al, ; van Dijk et al, ). In addition, among breast cancer patients, negative status may increase perceptions of uncertainty because it suggests that there are deleterious or likely deleterious variants in genes other than BRCA1/2 or unknown causes of disease other than genetic inheritance (Heiniger, Butow, Charles, & Price, ; Maxwell et al, ). According to the uncertainty reduction theory and anxiety–uncertainty management, information seeking and anxiety reduction are two key functions of communication (Brashers, ).…”

Current directions in behavioral medicine research on genetic testing for disease susceptibility: introduction to the special section

“…The next two articles address the unique contribution of genetic risk information to understanding risk beyond genetic counseling alone (Heiniger et al, 2015;Taber et al, 2015a). Taber, Aspinwall, and their colleagues examined how individuals from melanoma-prone families known to be at risk for a CDKN2A/p16 (p16) mutation and who received genetic testing information differed from individuals in melanoma-prone families known to not carry the mutation (who therefore did not undergo genetic testing) in their understanding and acceptance of their melanoma risk status following genetic counseling.…”