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.
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。