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Why Breast Cancer Risk by the Numbers Is Not Enough: Evaluation of a Decision Aid in Multi-Ethnic, Low-Numerate Women.

Kukafka R, Yi H, Xiao T, Thomas P, Aguirre A, Smalletz C, David R, Crew K - J. Med. Internet Res. (2015)

Bottom Line: Among 34 participants, mean age was 53.4 years, 62% (21/34) were Hispanic, and 41% (14/34) demonstrated low numeracy.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.

View Article: PubMed Central - HTML - PubMed

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.

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.

No MeSH data available.


Related in: MedlinePlus

Schema of barriers and facilitators to the adoption of breast cancer risk assessment and risk-appropriate prevention strategies, which will inform the iterative design and refinement of the RealRisks decision aid.
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figure2: Schema of barriers and facilitators to the adoption of breast cancer risk assessment and risk-appropriate prevention strategies, which will inform the iterative design and refinement of the RealRisks decision aid.

Mentions: We conducted this study to inform the iterative design of the RealRisks decision aid. While the experience-based interface resulted in improved accuracy of breast cancer risk perceptions, our qualitative findings identified additional barriers to risk-based health care delivery, which need to be addressed (Figure 2). For example, to address the theme of distrust toward the health care system, RealRisks will now incorporate dialogue to explain that genetic testing has few or no benefits for women who do not have a family history that is associated with increased risk for BRCA1 or BRCA2 mutations. The experience-based interface will be extended to include how taking chemoprevention pills might impact their personalized risk, so they can learn by interacting with the game that benefit is seen only among high-risk women and risks outweigh benefits for women below a specified risk threshold. Moreover, we will emphasize using both dialogue and games that women across all risk strata have preventive options. The game will allow women to learn about screening and lifestyle choices. We consider this to be particularly salient as controversy over the potential harms of population-based mammographic screening due to overdiagnosis continues to escalate [42,43]. Future studies are needed to determine how these iterations to RealRisks are received, and more generally, whether decision aids, such as RealRisks, can improve accuracy of breast cancer risk perceptions, informed decision making, and acceptance of risk-appropriate prevention strategies.


Why Breast Cancer Risk by the Numbers Is Not Enough: Evaluation of a Decision Aid in Multi-Ethnic, Low-Numerate Women.

Kukafka R, Yi H, Xiao T, Thomas P, Aguirre A, Smalletz C, David R, Crew K - J. Med. Internet Res. (2015)

Schema of barriers and facilitators to the adoption of breast cancer risk assessment and risk-appropriate prevention strategies, which will inform the iterative design and refinement of the RealRisks decision aid.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4526996&req=5

figure2: Schema of barriers and facilitators to the adoption of breast cancer risk assessment and risk-appropriate prevention strategies, which will inform the iterative design and refinement of the RealRisks decision aid.
Mentions: We conducted this study to inform the iterative design of the RealRisks decision aid. While the experience-based interface resulted in improved accuracy of breast cancer risk perceptions, our qualitative findings identified additional barriers to risk-based health care delivery, which need to be addressed (Figure 2). For example, to address the theme of distrust toward the health care system, RealRisks will now incorporate dialogue to explain that genetic testing has few or no benefits for women who do not have a family history that is associated with increased risk for BRCA1 or BRCA2 mutations. The experience-based interface will be extended to include how taking chemoprevention pills might impact their personalized risk, so they can learn by interacting with the game that benefit is seen only among high-risk women and risks outweigh benefits for women below a specified risk threshold. Moreover, we will emphasize using both dialogue and games that women across all risk strata have preventive options. The game will allow women to learn about screening and lifestyle choices. We consider this to be particularly salient as controversy over the potential harms of population-based mammographic screening due to overdiagnosis continues to escalate [42,43]. Future studies are needed to determine how these iterations to RealRisks are received, and more generally, whether decision aids, such as RealRisks, can improve accuracy of breast cancer risk perceptions, informed decision making, and acceptance of risk-appropriate prevention strategies.

Bottom Line: Among 34 participants, mean age was 53.4 years, 62% (21/34) were Hispanic, and 41% (14/34) demonstrated low numeracy.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.

View Article: PubMed Central - HTML - PubMed

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.

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.

No MeSH data available.


Related in: MedlinePlus