Abstract：
OBJECTIVE: 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.
CONCLUSIONS: 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.
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.
CONCLUSIONS: 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.
摘要：
目标：我们的目标是应用以用户为中心的设计过程来识别短语，图形,以及传达数字风险的方法，这些方法可用于帮助患者了解他们的癌症风险以及接受BRCA1基因检测结果的下一步(阳性，负,和不确定意义的变体)。
方法：研究的第一阶段，以用户为中心的设计过程，包括4轮访谈（N=42，包括13名卫生保健专业人员和16名接受BRCA检测的患者）。第二个是随机的，对456名英国居民进行的参与者之间的实验研究，将结果报告与英国国家基因组实验室中心使用的报告进行了比较。结果是主观和客观的理解，沟通效能，可操作性，和感知风险。
结果：主观理解，沟通效能，以用户为中心的报告的可操作性都更高，感知风险没有差异。参与者查看以用户为中心的报告的理解在两个项目上明显更好，在6个项目上定向(但不显著)更好，在2个项目上方向(但不显著)更差。
结论：我们的研究结果表明，以用户为中心的设计是开发复杂遗传风险材料的一种有前途的方法。我们建议在传达BRCA相关风险时可能会提高理解力的措辞。
方法：研究的第一阶段，以用户为中心的设计过程，包括4轮访谈（N=42，包括13名卫生保健专业人员和16名接受BRCA检测的患者）。第二个是随机的，对456名英国居民进行的参与者之间的实验研究，将结果报告与英国国家基因组实验室中心使用的报告进行了比较。结果是主观和客观的理解，沟通效能，可操作性，和感知风险。
结果：主观理解，沟通效能，以用户为中心的报告的可操作性都更高，感知风险没有差异。参与者查看以用户为中心的报告的理解在两个项目上明显更好，在6个项目上定向(但不显著)更好，在2个项目上方向(但不显著)更差。
结论：我们的研究结果表明，以用户为中心的设计是开发复杂遗传风险材料的一种有前途的方法。我们建议在传达BRCA相关风险时可能会提高理解力的措辞。
