LONG-TERM BREAST CANCER SURVIVORS' PERCEPTIONS OF CANCER RISK: A MENTAL MODELS STUDY

Purpose:    The purpose of this study was to compare prevailing medical evidence to long-term breast cancer survivors’ beliefs about their risks of breast cancer recurrence and second cancer occurrence.

Method:    Consistent with Morgan and colleagues’ risk communication approach (2002), mental models interviews were used to generate a broad set of risk beliefs held by long-term breast cancer survivors. First, four physician interviews were conducted and medical guidelines reviewed to create an expert model influence diagram that summarized direct and indirect relationships between risk factors and cancer outcomes for this population. Thirteen women five or more years post-active breast cancer treatment (surgery and radiation and/or chemotherapy) were recruited from a cancer survivorship clinic within an academic medical center and cancer-oriented community groups located in the southeastern U.S. Semi-structured interviews began with general questions about perceptions of personal recurrence and secondary cancer risk and related risk factors. Next, for risk factors known to influence cancer risk but previously unmentioned, women were asked specifically if and how they believed these factors influence future cancer risk. Analysis of interview transcripts followed an inductive process and open coding procedure to identify concepts and their interrelatedness. Transcripts were independently reviewed by four coders, with discrepancies resolved via group debriefing.   Risk beliefs were categorized as expert (consistent with the expert model), non-expert (inconsistent with the expert model), uncertain (indecisive) or indiscriminant(general or imprecise).  

Result:    Women ranged from 45-75 years of age and were 6-22 years from their breast cancer diagnosis. All were insured by Medicare or private insurance, and a majority was college-educated. While participants held some expert beliefs, the primary finding was that a large majority strongly expressed non-expert or indiscriminant beliefs that psychological stress is a primary contributor to future cancers. Participants also expressed other uncertain and indiscriminant beliefs, including a limited understanding of the mechanisms through which modifiable health behaviors (e.g., nutrition and exercise) reduce cancer risk.

Conclusion:    Results indicate a potential overemphasis on psychological stress, which could reflect the crowding out of communications targeting evidence-based behaviors known to modify cancer risk, such as exercise. Despite the relatively educated, insured and activated participant sample, breast cancer survivors held numerous misconceptions and uncertain and indiscriminant beliefs, suggesting this is a promising area for larger-scale risk communication research and intervention.