Can Consumers Trust Web-Based Information About Celiac Disease? Accuracy, Comprehensiveness, Transparency, and Readability of Information on the Internet
Can Consumers Trust Web-Based Information About Celiac Disease? Accuracy, Comprehensiveness, Transparency, and Readability of Information on the Internet
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DOI：
10.2196/ijmr.2010
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发表时间：
2012-01-01
影响因子：
2
通讯作者：
Kagnoff, Martin F.
中科院分区：
文献类型：
--
作者：
McNally, Shawna L.;Donohue, Michael C.;Kagnoff, Martin F.
背景：乳糜泻是一种自身免疫性疾病，影响约1%的美国人口。疾病的特征是小肠粘膜受损和营养吸收不良。在遗传易感的个体中，通过饮食暴露于小麦中的麸质和黑麦和大麦中的麸质样蛋白质而激活乳糜泻。症状多种多样，包括胃肠道和肠外表现。治疗需要严格遵守无麸质饮食。互联网是有关乳糜泻的健康信息的主要来源。尽管如此，在各种网站上提供的关于乳糜泻的信息经常受到患者和其他医疗保健专业人员关于其可靠性和内容的质疑。目的：确定100个提供乳糜泻信息的最广泛访问的网站上信息的准确性，全面性，透明度和可读性。使用搜索词腹腔疾病，我们分析了100个由学术，商业，非营利和其他专业非学术来源发布的顶级英语网站的准确性，全面性，透明度和阅读等级。每个研究中心由3名审查员独立评估。网站的准确性和全面性进行了独立的探讨使用一套客观的核心信息，腹腔疾病。我们使用了19个一般标准来评估网站透明度。网站可读性由Flesch-Kincaid阅读等级决定。独立分析每个参数的结果。此外，我们加权和组合参数，以产生一个整体得分，称为网站quality.Results：我们在最后的分析包括98个网站。其中，47 - 48%提供了关于乳糜泻的具体信息，其准确度低于95%，即，预定的截止值被认为是最低可接受的准确度水平。无论发布的信息是否准确，98个网站中有51个网站包含的核心乳糜泻信息不到50%，这些信息被认为对提供乳糜泻一般信息的网站很重要。学术网站在署名、信息及时性、信息来源和其他重要披露方面的透明度明显低于商业网站（P = .005）。网站发布者的类型并不能预测网站的准确性、全面性或整体网站质量。98个4%的网站中只有4个网站的总体质量得分达到80分或以上，这是一个先验的网站被判断为值得信赖和可靠的最低得分。许多关于乳糜泻的网站上的信息不够准确、全面和透明，或以适当的阅读等级呈现，因此被认为对患者来说足够可信和可靠，卫生保健提供者、乳糜泻支持团体和公众。这有可能对有关乳糜泻重要方面的决策产生不利影响，包括其适当和正确的诊断，治疗和管理。
Background: Celiac disease is an autoimmune disease that affects approximately 1% of the US population. Disease is characterized by damage to the small intestinal lining and malabsorption of nutrients. Celiac disease is activated in genetically susceptible individuals by dietary exposure to gluten in wheat and gluten-like proteins in rye and barley. Symptoms are diverse and include gastrointestinal and extraintestinal manifestations. Treatment requires strict adherence to a gluten-free diet. The Internet is a major source of health information about celiac disease. Nonetheless, information about celiac disease that is available on various websites often is questioned by patients and other health care professionals regarding its reliability and content.Objectives: To determine the accuracy, comprehensiveness, transparency, and readability of information on 100 of the most widely accessed websites that provide information on celiac disease.Methods: Using the search term celiac disease, we analyzed 100 of the top English-language websites published by academic, commercial, nonprofit, and other professional nonacademic) sources for accuracy, comprehensiveness, transparency, and reading grade level. Each site was assessed independently by 3 reviewers. Website accuracy and comprehensiveness were probed independently using a set of objective core information about celiac disease. We used 19 general criteria to assess website transparency. Website readability was determined by the Flesch-Kincaid reading grade level. Results for each parameter were analyzed independently. In addition, we weighted and combined parameters to generate an overall score, termed website quality.Results: We included 98 websites in the final analysis. Of these, 47 48%) provided specific information about celiac disease that was less than 95% accurate ie, the predetermined cut-off considered a minimum acceptable level of accuracy). Independent of whether the information posted was accurate, 51 of 98 52%) websites contained less than 50% of the core celiac disease information that was considered important for inclusion on websites that provide general information about celiac disease. Academic websites were significantly less transparent P = .005) than commercial websites in attributing authorship, timeliness of information, sources of information, and other important disclosures. The type of website publisher did not predict website accuracy, comprehensiveness, or overall website quality. Only 4 of 98 4%) websites achieved an overall quality score of 80 or above, which a priori was set as the minimum score for a website to be judged trustworthy and reliable.Conclusions: The information on many websites addressing celiac disease was not sufficiently accurate, comprehensive, and transparent, or presented at an appropriate reading grade level, to be considered sufficiently trustworthy and reliable for patients, health care providers, celiac disease support groups, and the general public. This has the potential to adversely affect decision making about important aspects of celiac disease, including its appropriate and proper diagnosis, treatment, and management.