Patients often have difficulty understanding genetic test reports. Technical language and jargon can impede comprehension and limit patients using results to act on findings. One potential way to improve patient understanding of genetic test reports is to provide patient‐facing materials. This study aimed to examine understandability and actionability of co‐created patient‐facing materials for genetic test results in a research context. We combined interprofessional perspectives and patient engagement to co‐create patient‐facing materials for patients undergoing research genetic testing for congenital hypogonadotropic hypogonadism (Kallmann syndrome). The iterative development process was guided by principles of health literacy and human‐centered design (i.e., design thinking). Readability was assessed using eight validated algorithms. Patients and parents evaluated materials using a web‐based survey. The gold standard Patient Education Materials Assessment Tool for print materials (PEMAT‐P) was employed to measure understandability (content, style, use of numbers, organization, design, use of visual aids) and actionability. PEMAT‐P scores >80% were considered high quality. Results were analyzed descriptively and correlations performed to identify relationships between education/health literacy and PEMAT‐P ratings. A consensus score of eight algorithms indicated the materials were an 8^th–9th grade reading level. Our findings are consistent with the U.S. Department of Health and Human Services ‘average difficulty’ classification (i.e., 7th–9th grade). In total, 61 patients/parents evaluated the materials. ‘Visual Aids’ received the lowest mean PEMAT‐P rating (89%). All other parameters scored 90%–97%. PEMAT‐P scores did not differ according to educational attainment (less than college vs. college or more, p = 0.28). Participants with adequate health literacy were more likely to approve of the ‘organization’ of information (p < 0.05). Respondents with low health literacy had more favorable views of ‘visual aids’ (p < 0.01). Involving patients in a co‐creation process can produce high‐quality patient‐facing materials that are easier to understand.

中文翻译：

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评估共同创建的面向患者的材料，以增加对基因检测结果的理解

患者往往难以理解基因检测报告。技术语言和行话可能会阻碍理解并限制患者使用结果来对发现采取行动。提高患者对基因检测报告理解的一种潜在方法是提供面向患者的材料。本研究旨在检查在研究背景下共同创建的面向患者的基因测试结果材料的可理解性和可操作性。我们将跨专业的观点和患者参与相结合，为接受先天性促性腺激素性性腺功能减退症（卡尔曼综合征）研究基因检测的患者共同创建面向患者的材料。迭代开发过程以健康素养和以人为本的设计（即设计思维）原则为指导。使用八种经过验证的算法评估可读性。患者和家长使用基于网络的调查评估材料。采用黄金标准印刷材料患者教育材料评估工具 (PEMAT-P) 来衡量可理解性（内容、风格、数字的使用、组织、设计、视觉辅助工具的使用）和可操作性。PEMAT-P 评分>80% 被认为是高质量的。对结果进行描述性分析并进行相关性分析，以确定教育/健康素养与 PEMAT-P 评分之间的关​​系。八种算法的共识得分表明材料为 8 PEMAT-P 评分>80% 被认为是高质量的。对结果进行描述性分析并进行相关性分析，以确定教育/健康素养与 PEMAT-P 评分之间的关​​系。八种算法的共识得分表明材料为 8 PEMAT-P 评分>80% 被认为是高质量的。对结果进行描述性分析并进行相关性分析，以确定教育/健康素养与 PEMAT-P 评分之间的关​​系。八种算法的共识得分表明材料为 8^th – 9 年级阅读水平。我们的研究结果与美国卫生与公众服务部的“平均难度”分类（即 7-9 年级）一致。总共有 61 名患者/家长评估了这些材料。“视觉教具”的 PEMAT-P 平均评分最低 (89%)。所有其他参数得分为 90%–97%。PEMAT‐P 分数没有因教育程度而异（低于大学与大学或更高，p  = 0.28）。具有足够健康素养的参与者更可能赞同信息的“组织”（p  < 0.05）。健康素养低的受访者对“视觉辅助工具”的看法更佳（p < 0.01)。让患者参与共同创造过程可以产生更容易理解的高质量的面向患者的材料。