Zhang Yue, Nguyen Catherine C, Bilimoria Karl Y, Merkow Ryan P
Northwestern University Feinberg School of Medicine, NMH/Galter 21St Floor, 675 N Saint Clair, Chicago, IL, 60611, USA.
Loyola University, Chicago, IL, 60660, USA.
Arch Dermatol Res. 2023 Apr;315(3):629-632. doi: 10.1007/s00403-022-02381-9. Epub 2022 Aug 17.
The Internet is a significant source of information for patients. According to the National Institutes of Health, patient education materials (PEMs) should be at or below an eighth-grade reading level. Merkel cell carcinoma (MCC) is a rare and aggressive skin cancer that affects patients over 50 with rising incidence. Unfortunately, US adults aged 65 + have the least proficiency in health literacy. This study assessed the readability of online PEMs and factors that contribute to readability. We retrieved 50 PEM websites and extracted primary content. A readability software package calculated six readability statistics and generated a consensus standard readability. Overall, only eight articles had a standard reading level of eighth-grade level or below (16%). The median standard reading level was at the 11th-grade level. We also examined MCC PEMs from cancer treatment institution websites (N = 20). We determined whether they contained institution-specific information, meaning they contained text information about the institution-specific expertise and specialist team. Websites containing this information (N = 13) had a significantly higher reading level than websites that did not (N = 7) in five of six readability metrics (p < 0.05). We concluded that MCC PEMs with institution-specific information led to significantly higher reading level scores. We propose that such information may increase cognitive load, as patients are learning about their disease and treatment and contending with the institution-specific information. The Cognitive Load Theory principles of intrinsic load (learning the material relevant to the disease and treatment) and extraneous load (institution-specific information and increased reading level) are constrained by limited working memory. Working memory decreases with age; hence, the patient demographic most sensitive to increased extraneous load tends to overlap with that of MCC. As patients typically read pages linked from their search engine, we suggest moving institution-specific information to another page, separate from the PEMs.
互联网是患者获取信息的重要来源。根据美国国立卫生研究院的说法，患者教育材料（PEMs）的阅读水平应在八年级及以下。默克尔细胞癌（MCC）是一种罕见且侵袭性强的皮肤癌，主要影响50岁以上的人群，其发病率呈上升趋势。不幸的是，65岁及以上的美国成年人健康素养水平最低。本研究评估了在线PEMs的可读性以及影响可读性的因素。我们检索了50个PEM网站并提取了主要内容。一个可读性软件包计算了六种可读性统计数据，并生成了一个共识标准可读性。总体而言，只有八篇文章的标准阅读水平在八年级及以下（16%）。标准阅读水平的中位数为十一年级。我们还检查了癌症治疗机构网站上的MCC PEMs（N = 20）。我们确定它们是否包含机构特定信息，即它们是否包含有关机构特定专业知识和专家团队的文本信息。在六个可读性指标中的五个指标上，包含此类信息的网站（N = 13）的阅读水平显著高于不包含此类信息的网站（N = 7）（p < 0.05）。我们得出结论，包含机构特定信息的MCC PEMs导致阅读水平得分显著更高。我们提出，此类信息可能会增加认知负荷，因为患者在了解自己的疾病和治疗情况时还要处理机构特定信息。内在负荷（学习与疾病和治疗相关的材料）和外在负荷（机构特定信息和阅读水平提高）的认知负荷理论原则受到有限工作记忆的限制。工作记忆会随着年龄增长而下降；因此，对增加的外在负荷最敏感的患者群体往往与MCC患者群体重叠。由于患者通常阅读从搜索引擎链接的页面，我们建议将机构特定信息移到与PEMs分开的另一页面。
