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评估脑动静脉畸形在线信息的质量、可读性及活跃度。

Evaluating the Quality, Readability, and Activity of Online Information on Brain Arteriovenous Malformations.

作者信息

Mehra Mehul, Brody Pierce A, Kollapaneni Sai Suraj, Sakhalkar Om, Rahimi Scott

机构信息

Neurological Surgery, Medical College of Georgia, Augusta University, Augusta, USA.

出版信息

Cureus. 2023 Sep 26;15(9):e45984. doi: 10.7759/cureus.45984. eCollection 2023 Sep.

Abstract

Introduction Brain arteriovenous malformations (AVMs) are vascular deformities created by improper connections between arteries and veins, most commonly in the brain and spinal cord. The management is complex and patient-dependent; further understanding of patient education activities is imperative. Internet access has become more ubiquitous, allowing patients to utilize a large database of medical information online. Using Google Trends (GT) (Google LLC, Mountain View, CA, USA), one can see the public interest in a particular topic over time. Further, when presented with numerous search results, patients may not be able to identify the highest-yielding resources, making objective measures of information quality and readability imperative. Methods A GT analysis was conducted for "hereditary hemorrhagic telangiectasia," "cerebral aneurysm," and "arteriovenous malformation". These relative search volumes (RSV) were compared with the 2017 to 2019 annual USA AVM diagnosis quantity for correlation. These RSVs were also compared with the 2017 to 2019 annual USA deaths due to cerebral hemorrhagic conditions. One search was conducted for "brain arteriovenous malformation". Since most users looking for health information online use only the first page of sources, the quality and readability analyses were limited to the first page of results on Google search. Five quality tools and six readability formulas were used. Results Pearson's correlation coefficients showed positive correlations between USA AVM RSVs and annual AVM deaths per capita from 2017 to 2019 (R=0.932). The AVM annual diagnosis quantity and AVM RSVs showed a strong positive correlation as well (R=0.998). Hereditary hemorrhagic telangiectasia and cerebral aneurysms had strong positive correlations between their RSVs and their corresponding annual diagnoses in the 2017 to 2019 time period (R=0.982, R=0.709). One-way ANOVA, for USA's 2004 to 2021 AVM RSVs and 2004 to 2019 deaths per capita, displayed no month-specific statistically significant repeating pattern (all p>0.483). The DISCERN tool had four websites that qualified as "poor" and five as "good." The average score for the tool was "good." The Journal of the American Medical Association (JAMA) benchmark scores were very low on average, as four websites achieved zero points. There was a wide variance in the currency, relevance, authority, accuracy, and purpose (CRAAP) scores, indicating an inconsistent level of webpage reliability across results. The patient education materials assessment tool (PEMAT) understandability (86.6%) showed much higher scores than the PEMAT actionability (54.6%). No readability score averaged at or below the American Medical Association (AMA)-recommended sixth-grade reading level. Conclusion These GT correlations may be due to patients and families with new diagnoses researching those same conditions online. The seasonality results reflect that no prior research has detected seasonality for AVM diagnosis or presentation. The quality study showed a wide variance in website ethics, treatment information quality, website/author qualifications, and actionable next steps regarding AVMs. Overall, this study showed that patients are routinely attempting to access information regarding these intracranial conditions, but the information available, specifically regarding AVMs, is not routinely reliable and the reading level required to understand them is too high.

摘要

引言 脑动静脉畸形(AVM)是动脉与静脉之间异常连接所形成的血管畸形,最常见于脑和脊髓。其治疗复杂且因患者而异;因此,深入了解患者教育活动势在必行。互联网接入已变得更为普遍,使患者能够利用在线医学信息的庞大数据库。通过谷歌趋势(GT)(谷歌有限责任公司,美国加利福尼亚州山景城),可以看出公众对特定主题的兴趣随时间的变化。此外,面对众多搜索结果时,患者可能无法识别出最有价值的资源,因此对信息质量和可读性进行客观评估至关重要。

方法 对“遗传性出血性毛细血管扩张症”“脑动脉瘤”和“动静脉畸形”进行了GT分析。将这些相对搜索量(RSV)与2017年至2019年美国每年的AVM诊断数量进行相关性比较。这些RSV还与2017年至2019年美国因脑出血性疾病导致的年度死亡人数进行了比较。对“脑动静脉畸形”进行了一次搜索。由于大多数在网上查找健康信息的用户仅使用搜索结果的第一页来源,因此质量和可读性分析仅限于谷歌搜索结果的第一页。使用了五种质量工具和六个可读性公式。

结果 皮尔逊相关系数显示,2017年至2019年美国AVM的RSV与人均年度AVM死亡人数之间呈正相关(R = 0.932)。AVM年度诊断数量与AVM的RSV之间也呈现出很强的正相关(R = 0.998)。2017年至2019年期间,遗传性出血性毛细血管扩张症和脑动脉瘤的RSV与它们相应的年度诊断数量之间呈强正相关(R = 0.982,R = 0.709)。对美国2004年至2021年的AVM RSV和2004年至2019年的人均死亡人数进行的单因素方差分析显示,没有特定月份的统计学显著重复模式(所有p>0.483)。DISCERN工具评估的网站中有4个被评为“差”,5个被评为“好”。该工具的平均得分是“好”。《美国医学会杂志》(JAMA)的基准分数平均很低,有4个网站得零分。在时效性、相关性、权威性、准确性和目的(CRAAP)得分方面存在很大差异,表明各结果网页的可靠性水平不一致。患者教育材料评估工具(PEMAT)的可理解性(86.6%)得分远高于PEMAT的可操作性(54.6%)。没有任何可读性得分达到或低于美国医学会(AMA)推荐的六年级阅读水平。

结论 这些GT相关性可能是由于新诊断的患者及其家属在网上搜索相同病症。季节性结果表明,此前没有研究发现AVM诊断或发病存在季节性。质量研究表明,关于AVM的网站伦理、治疗信息质量、网站/作者资质以及可行的后续步骤存在很大差异。总体而言,本研究表明患者经常试图获取有关这些颅内病症的信息,但所获得的信息,特别是关于AVM的信息,通常不可靠,且理解这些信息所需的阅读水平过高。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/79cd/10601510/089596112ff1/cureus-0015-00000045984-i01.jpg

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