Understanding Decision Making about Breast Cancer Prevention in Action: The Intersection of Perceived Risk, Perceived Control, and Social Context: NRG Oncology/NSABP DMP-1

Abstract

Background. Literature on decision making about breast cancer prevention focuses on individual perceptions and attitudes that predict chemoprevention use, rather than the process by which women decide whether to take risk-reducing medications. This secondary analysis aimed to understand how women’s perceptions of breast cancer risk and locus of control influence their decision making. Methods. Women were accrued as part of the NRG Oncology/National Surgical Adjuvant Breast and Bowel Project Decision-Making Project 1, a study aimed at understanding contributors to chemoprevention uptake. Thirty women participated in qualitative in-depth interviews after being counseled about chemoprevention. Deductive codes grouped women based on dimensions of risk perception and locus of control. We used a constant comparative method to make connections among inductive themes focused on decision making, deductive codes for perceived risk and perceived locus of control, and the influence of explanatory models within and across participants. Results. Participants were predominantly non-Hispanic white (63%), with an average age of 50.9 years. Decision making varied across groups: the high-perceived risk/high-perceived control group used “social evidence” to model the behaviors of others. High-perceived risk/low-perceived control women made decisions based on beliefs about treatment, rooted in the experiences of social contacts. The low-perceived risk/low-perceived control group interpreted signs of risk as part of the normal continuum of bodily changes in comparison to others. Low-perceived risk/high-perceived control women focused on maintaining a current healthy trajectory. Conclusion. “Social evidence” plays an important role in the decision-making process that is distinct from emotional aspects. Attending to patients’ perceptions of risk and control in conjunction with social context is key to caring for patients at high risk in a way that is evidence based and sensitive to patient preferences.

Understanding low chemoprevention uptake by women at high risk of breast cancer: findings from a qualitative inductive study of women’s risk-reduction experiences

“…A variety of provider-level barriers also impede chemoprevention usage, however, including lack of confidence in using risk-prediction models to identify high-risk patients, and lack of confidence discussing risk or prescribing chemoprevention medications [20][21][22][23]. From the patient side of the equation, cancer worry/anxiety, perceived breast cancer risk, and objective cancer risk are positively associated with the use of chemoprevention [1,11,13,[15][16][17][18][19][24][25][26][27][28], while underestimation of benefits and/or overestimation of risks, perception of (or worry about) low drug efficacy, and concerns about side effects are negatively associated with chemoprevention use [11,20,21,27,[29][30][31][32][33]. Decision aids may increase women's understanding of the risks and benefits of chemoprevention, but may not be consistently associated with either higher or lower uptake [15,34,35].…”

How do women who are informed that they are at increased risk of breast cancer appraise their risk? A systematic review of qualitative research

“…I take one and it curbs the headache enough that I can continue to work or not be impaired…and the risks [migraine v. breast cancer] just aren't the same." [31] Congruency between personal risk appraisals and clinical estimates. Prior to receiving a clinically derived risk estimate, it is evident that women have pre-existing ideas about their breast cancer risk and expectations for what the estimate will reveal.…”

“…And not that she brought that on herself, but she had many diseases, and because she didn't take care of herself, and she was the total opposite of what I am." [31] One the other hand, the identification of similarities also caused women to fear that they would follow the same path to disease as their affected relatives, "I feel like it's just, it's going to happen because I have the same breasts as my mom" [36]. A particularly significant factor when drawing comparisons between the self and affected relatives was age.…”

“…Of the 14 records included, six were conducted in the US, five in the UK and three in Canada. The primary aim of eleven records was to explore how women experience, view, perceive, describe, make sense of, conceive of or adjust to being at increased risk of breast cancer [27][28][29][30][31][32][33][34][35][36][37]. Two records focused on women's decision making for taking preventative medication; interview questions also focused on perceptions of being at increased risk of breast cancer [38,39].…”

Understanding breast cancer risk factors: is there any mismatch between laywomen perceptions and expert opinions

“…Awareness of such risk factors could be conductive to the improvement in health promoting behaviors, increase in health literacy, and thus, perceived control over the BC. One’s perceived ability to control his or her health contributes to adopting healthy behaviors, such as lifestyle improvements and participation in screening programs [ 29 ].…”