Department of Medicine, Division of Respirology, and.
Libin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada.
Ann Am Thorac Soc. 2022 Aug;19(8):1404-1413. doi: 10.1513/AnnalsATS.202103-325OC.
Patients with pulmonary arterial hypertension (PAH) or their caregivers may seek information about their disease online, but the accuracy and quality of websites on PAH is not known. To assess the quality, reliability, and accuracy of information on websites about PAH. We searched Google, Yahoo, and Bing for "pulmonary arterial hypertension" and screened the first 200 sites from each search engine. Website quality was evaluated by two authors using the validated DISCERN tool (best score is 80) and the (JAMA) benchmark criteria (best score is 4). Content accuracy was assessed according to 39 prespecified disease-relevant topics from international PAH guidelines. Linear regression models and generalized estimating equations were used to assess the association between website characteristics with JAMA benchmark criteria, DISCERN scores, and content scores. One hundred seventeen eligible sites were included (50% scientific organizations, 20% foundation and/or advocacy organizations, 14% industry or for-profit, 12% personal commentary or blogs, and 4% news and media sites), with most sites hosted in North America. The median time since last website update was 1.2 years (interquartile range [IQR], 0.4-2.6). Website readability was at the high school or college education level (Flesh Reading Ease score 39.9 ± 15.2; reading grade, 11.9 ± 2.7), which is more challenging than the recommendation by the American Medical Association for patient medical information to be written at fifth- to sixth-grade levels. Only 23% had Health on the Net Code of Conduct certification for ethical presentation of healthcare information. The median DISCERN total score and JAMA benchmark score were 29.5 (IQR, 22.5-35.5) and 1.5 (IQR, 0.5-2.5), respectively, indicating poor transparency, reliability, and quality of information. Foundation/advocacy organization sites had higher DISCERN scores than personal commentary/blog sites and higher content scores than industry/for-profit sites. Websites with Health on the Net Code of Conduct certification were more reliable and had higher JAMA benchmark scores. A minority of websites addressed exercise/rehabilitation, palliative care, pregnancy, and financial concerns relevant to patients. Most internet websites on PAH were not easily readable, comprehensive, or transparent. Using a systematic appraisal approach, we identified the highest-quality internet websites with balanced and accurate coverage of relevant issues and treatment options for patients with PAH, which may be useful for patients, caregivers, and clinicians.
患者肺动脉高压（PAH）或其照顾者可能会在网上寻找有关其疾病的信息，但 PAH 网站的准确性和质量尚不清楚。为了评估 PAH 网站信息的质量、可靠性和准确性。我们在 Google、Yahoo 和 Bing 上搜索“肺动脉高压”，并筛选了每个搜索引擎的前 200 个网站。使用经过验证的 DISCERN 工具（最佳得分为 80 分）和 JAMA 基准标准（最佳得分为 4 分），由两位作者评估网站质量。根据国际 PAH 指南中的 39 个预先确定的疾病相关主题评估内容准确性。使用线性回归模型和广义估计方程评估网站特征与 JAMA 基准标准、DISCERN 评分和内容评分之间的关联。符合条件的 117 个网站入选（50%为科学组织，20%为基金会和/或宣传组织，14%为行业或盈利组织，12%为个人评论或博客，4%为新闻和媒体网站），其中大多数网站位于北美。网站最近更新时间中位数为 1.2 年（四分位距[IQR]，0.4-2.6）。网站可读性为高中或大学教育水平（Flesh Reading Ease 分数 39.9±15.2；阅读年级，11.9±2.7），这比美国医学协会建议的面向患者的医疗信息应编写为五年级至六年级的水平更具挑战性。只有 23%的网站获得了卫生保健信息伦理呈现的健康网络代码认证。DISCERN 总分和 JAMA 基准评分的中位数分别为 29.5（IQR，22.5-35.5）和 1.5（IQR，0.5-2.5），表明信息的透明度、可靠性和质量较差。基金会/宣传组织网站的 DISCERN 评分高于个人评论/博客网站，内容评分高于行业/盈利组织网站。具有健康网络代码认证的网站更可靠，JAMA 基准评分更高。只有少数网站涉及与患者相关的锻炼/康复、姑息治疗、怀孕和财务问题。大多数 PAH 互联网网站不易阅读、全面或透明。使用系统评价方法，我们确定了最高质量的互联网网站，这些网站对患者的相关问题和治疗选择进行了平衡和准确的报道，这可能对患者、照顾者和临床医生有用。
