A focus group study on breast cancer risk presentation: one format does not fit all

Abstract

Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Qué bec City (2), Montré al (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1-numerical: cumulative risk probabilities by age until 80 years; 2-risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3-relative risk of breast cancer by age 80 years; 4 and 5-absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6-qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.

Public preferences for communicating personal genomic risk information: a focus group study

“…Research on risk communication has demonstrated that preferences for risk formats are likely to vary and there is no consensus on how best to present personalized risk information . Therefore, we included a range of risk formats.…”

“…We followed strategies for presenting risk information proposed by Lautenbach et al . and selected different visual representations of disease risk appropriate for a range of numeracy levels and accompanying text that describes the risk in relative and absolute terms. ‘Genetic make‐up’ was described by facilitators at the beginning of the discussion (Appendix S1), and participants were invited to discuss their understanding and to raise any questions regarding risk as presented in Fig.…”

Experience of Norwegian Female BRCA1 and BRCA2 Mutation‐Carrying Participants in Educational Support Groups: a Qualitative Study

“…Another key issue to explore is the need for educational support groups (ESGs) in connection with clinical follow-up programs (Dorval et al 2013;Landsbergen et al 2010;Patenaude et al 2008). A Norwegian study by Austvoll-Dahlgren et al (2011) presented positive effect on psychosocial outcomes such as mental health, coping and relationships, and on knowledge regarding own illness, by offering ESG to patients with chronic conditions.…”

Towards Prevention of Breast Cancer: What Are the Clinical Challenges?

“…Relatedly, Dorval and colleagues highlighted the need for consensus regarding breast cancer risk communication tools given the plethora of breast cancer risk prediction models that provide not easily interpretable probability estimates (78). In their study, participants were shown six different illustrative risk formats, of which they indicated their appreciation of each format.…”

“…Appreciation was based on merging of likeability, clarity, perceived risk understanding, and emotional impact. Participants preferred formats that integrated quantitative, qualitative, and visual approaches (78). In general, women at higher risk of breast cancer may view their perceived risk as higher than estimates from cancer risk prediction models; for these women, graphic illustrations may enhance the degree of match (79).…”