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1.
PEC Innov ; 1: None, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36518604

ABSTRACT

Background: Clinicians are often advised to use pictographs to communicate risk, but whether they offer benefits when communicating risk imprecision (e.g., 65%-79%) is unknown. Purpose: To test whether any of three approaches to visualizing imprecision would more effectively communicate breast and ovarian cancer risk for BRCA1 pathogenic variant carriers. Methods: 1,300 UK residents were presented with a genetic report with information about BRCA1-related risks, with random assignment to one of four formats: no visualization (text alone), or a pictograph using shaded icons, a gradient, or arrows marking range endpoints. We also tested pictographs in two layouts. Analysis of variance (ANOVA) and regression was employed. Results: There was no effect of format. Participants shown pictographs vs. text alone had better uptake of breast cancer risk messages (p < .05, η 2 = 0.003). Pictographs facilitated memory for the specific amount of risk (p < 0.001, η 2 = 0.019), as did the tabular layout. Individuals not having completed upper secondary education may benefit most. Conclusions: We found weak evidence in favor of using simple pictographs with ranges to communicate BRCA risk (versus text alone), and of the tabular layout. Innovation: Testing different ways of communicating imprecision within pictographs is a novel and promising line of research.

2.
Genet Med ; 24(8): 1684-1696, 2022 08.
Article in English | MEDLINE | ID: mdl-35522238

ABSTRACT

PURPOSE: Our objective was to apply a user-centered design process to identify phrases, graphics, and ways of communicating numerical risks that could be used to help patients understand their cancer risk and next steps on receiving BRCA1 genetic test results (positive, negative, and variants of uncertain significance). METHODS: The first phase of the study, a user-centered design process, consisted of 4 rounds of interviews (N = 42, including 13 health care professionals and 16 patients having undergone BRCA testing). The second was a randomized, between-participants experimental study of 456 United Kingdom residents that compared the resulting reports to reports used in a United Kingdom national genomic laboratory hub. Outcomes were subjective and objective comprehension, communication efficacy, actionability, and perceived risk. RESULTS: Subjective comprehension, communication efficacy, and actionability were all higher for the user-centered reports, with no difference in perceived risk. Comprehension of participants viewing user-centered reports was significantly better on 2 items, directionally (but not significantly) better on 6 items, and directionally (but not significantly) worse on 2 items. CONCLUSION: Our results imply that user-centered design is a promising approach for developing materials about complex genetic risks. We suggest wordings that are likely to lead to improved comprehension when communicating BRCA-associated risks.


Subject(s)
Genetic Testing , User-Centered Design , BRCA1 Protein/genetics , Communication , Humans , Risk Factors , United Kingdom
3.
R Soc Open Sci ; 8(4): 201721, 2021 Apr 21.
Article in English | MEDLINE | ID: mdl-33996117

ABSTRACT

As increasing amounts of data accumulate on the effects of the novel coronavirus SARS-CoV-2 and the risk factors that lead to poor outcomes, it is possible to produce personalized estimates of the risks faced by groups of people with different characteristics. The challenge of how to communicate these then becomes apparent. Based on empirical work (total n = 5520, UK) supported by in-person interviews with the public and physicians, we make recommendations on the presentation of such information. These include: using predominantly percentages when communicating the absolute risk, but also providing, for balance, a format which conveys a contrasting (higher) perception of risk (expected frequency out of 10 000); using a visual linear scale cut at an appropriate point to illustrate the maximum risk, explained through an illustrative 'persona' who might face that highest level of risk; and providing context to the absolute risk through presenting a range of other 'personas' illustrating people who would face risks of a wide range of different levels. These 'personas' should have their major risk factors (age, existing health conditions) described. By contrast, giving people absolute likelihoods of other risks they face in an attempt to add context was considered less helpful. We note that observed effect sizes generally were small. However, even small effects are meaningful and relevant when scaled up to population levels.

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