title: Why Breast Cancer Risk by the Numbers Is Not Enough: Evaluation of a Decision Aid in Multi-Ethnic, Low-Numerate Women.
abstract: BACKGROUND
  Breast cancer risk assessment including genetic testing can be used to classify people into different risk groups with screening and preventive interventions tailored to the needs of each group, yet the implementation of risk-stratified breast cancer prevention in primary care settings is complex.
  
  
  OBJECTIVE
  To address barriers to breast cancer risk assessment, risk communication, and prevention strategies in primary care settings, we developed a Web-based decision aid, RealRisks, that aims to improve preference-based decision-making for breast cancer prevention, particularly in low-numerate women.
  
  
  METHODS
  RealRisks incorporates experience-based dynamic interfaces to communicate risk aimed at reducing inaccurate risk perceptions, with modules on breast cancer risk, genetic testing, and chemoprevention that are tailored. To begin, participants learn about risk by interacting with two games of experience-based risk interfaces, demonstrating average 5-year and lifetime breast cancer risk. We conducted four focus groups in English-speaking women (age ≥18 years), a questionnaire completed before and after interacting with the decision aid, and a semistructured group discussion. We employed a mixed-methods approach to assess accuracy of perceived breast cancer risk and acceptability of RealRisks. The qualitative analysis of the semistructured discussions assessed understanding of risk, risk models, and risk appropriate prevention strategies.
  
  
  RESULTS
  Among 34 participants, mean age was 53.4 years, 62% (21/34) were Hispanic, and 41% (14/34) demonstrated low numeracy. According to the Gail breast cancer risk assessment tool (BCRAT), the mean 5-year and lifetime breast cancer risk were 1.11% (SD 0.77) and 7.46% (SD 2.87), respectively. After interacting with RealRisks, the difference in perceived and estimated breast cancer risk according to BCRAT improved for 5-year risk (P=.008). In the qualitative analysis, we identified potential barriers to adopting risk-appropriate breast cancer prevention strategies, including uncertainty about breast cancer risk and risk models, distrust toward the health care system, and perception that risk assessment to pre-screen women for eligibility for genetic testing may be viewed as rationing access to care.
  
  
  CONCLUSIONS
  In a multi-ethnic population, we demonstrated a significant improvement in accuracy of perceived breast cancer risk after exposure to RealRisks. However, we identified potential barriers that suggest that accurate risk perceptions will not suffice as the sole basis to support informed decision making and the acceptance of risk-appropriate prevention strategies. Findings will inform the iterative design of the RealRisks decision aid.
authors.affiliation: Columbia University, College of Physicians and Surgeons, Biomedical Informatics, Mailman School of Public Health, Sociomedical Sciences, New York, NY, United States. rk326@cumc.columbia.edu.
authors.forename: Rita
authors.identifier: http://orcid.org/0000-0002-0960-7576
authors.initials: R
authors.lastname: Kukafka
authors.forename: Haeseung
authors.identifier: http://orcid.org/0000-0002-2457-3204
authors.initials: H
authors.lastname: Yi
authors.forename: Tong
authors.identifier: http://orcid.org/0000-0001-7634-9063
authors.initials: T
authors.lastname: Xiao
authors.forename: Parijatham
authors.identifier: http://orcid.org/0000-0003-2973-6639
authors.initials: P
authors.lastname: Thomas
authors.forename: Alejandra
authors.identifier: http://orcid.org/0000-0001-6481-8782
authors.initials: A
authors.lastname: Aguirre
authors.forename: Cindy
authors.identifier: http://orcid.org/0000-0002-6786-4319
authors.initials: C
authors.lastname: Smalletz
authors.forename: Raven
authors.identifier: http://orcid.org/0000-0002-4154-8377
authors.initials: R
authors.lastname: David
authors.forename: Katherine
authors.identifier: http://orcid.org/0000-0002-9637-2962
authors.initials: K
authors.lastname: Crew
mesh_terms: D001943:Breast Neoplasms / Q000453:epidemiology* / Q000208:ethnology* / Q000235:genetics; D054626:Consumer Health Information / Q000379:methods*; D003661:Decision Support Techniques; D055088:Early Detection of Cancer; D005006:Ethnicity; D005260:Female; D017144:Focus Groups; D006801:Humans; D008875:Middle Aged; D018570:Risk Assessment; D012307:Risk Factors; D014481:United States / Q000453:epidemiology
keywords: breast cancer; consumer health informatics; decision aid; decision making; genetic testing; risk communication; risk stratified screening