Department of Clinical and Experimental Medicine and Neuroscience, Brighton and Sussex Medical School, Falmer, Brighton, BN1 9RY, UK.
Centre of Resilience for Social Justice, School of Health Sciences, University of Brighton, Falmer, Brighton, UK.
Rheumatol Int. 2019 Apr;39(4):735-742. doi: 10.1007/s00296-019-04265-0. Epub 2019 Mar 6.
Fibromyalgia is a multi-factorial illness primarily characterised by widespread chronic pain and fatigue, with several symptoms and associated conditions. Due to a lack of clinical awareness and an absence of objective diagnostic measures, fibromyalgia patients often engage with online health information. The aim is to investigate the completeness and trustworthiness of the information available online on fibromyalgia. Google.co.uk was searched for 'fibromyalgia', the first 200 webpages were imported and 148 were analysed for standard health information quality criteria (JAMA score, HONcode) as well as completeness of information in terms of symptoms, causes and treatments mentioned. The most frequent typology of webpages was from health professionals (38%), with commercial websites being less frequent (7%). Overall, the quality, completeness and accessibility of online health information was poor. Completeness of coverage for symptoms, causes and associated conditions was especially lacking, with pages from not-for-profit organisations discussing the highest number of symptoms (median 8, min 0, max 11, interquartile range, IQR 4.5; n = 14) compared to the rest of the websites in the search engine results (median 4, min 0, max 11, IQR 4; n = 134). Mean readability was grade 9 (median 9, min 1, max 18, IQR 3), with only 8% websites meeting the recommended readability of grade 6. The Internet provides incomplete information on fibromyalgia, which does not fulfil the most queried aspect(s) by patients, symptoms, and may be difficult to understand by lay persons. Not-for-profit organisations provide the most complete information compared to other types of websites.
纤维肌痛症是一种多因素疾病，主要表现为广泛的慢性疼痛和疲劳，伴有多种症状和相关疾病。由于临床意识不足和缺乏客观的诊断措施，纤维肌痛症患者经常会查阅在线健康信息。本研究旨在调查网上关于纤维肌痛症的信息的完整性和可信度。在 Google.co.uk 上搜索“纤维肌痛症”，导入前 200 个网页，并对 148 个网页进行了标准健康信息质量标准（JAMA 评分、HONcode）以及所提到的症状、病因和治疗方法的信息完整性分析。最常见的网页类型是来自健康专业人员（38%），商业网站则较少（7%）。总体而言，在线健康信息的质量、完整性和可及性较差。症状、病因和相关疾病的覆盖完整性尤其缺乏，非营利组织的网页讨论的症状数量最多（中位数 8，最小 0，最大 11，四分位距，IQR 4.5；n=14），比搜索引擎结果中的其他网页（中位数 4，最小 0，最大 11，IQR 4；n=134）多。平均可读性为 9 级（中位数 9，最小 1，最大 18，IQR 3），只有 8%的网站符合推荐的 6 级可读性。互联网提供的关于纤维肌痛症的信息不完整，不能满足患者最常查询的方面（症状），并且可能对非专业人士来说难以理解。与其他类型的网站相比，非营利组织提供的信息最完整。
