Accuracy, completeness and accessibility of online information on fibromyalgia

Abstract

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.

YouTube as a source of information on fibromyalgia

“…To the best of our knowledge, there is no study evaluating the YouTube content as a source of patient information on FM. However, there are studies investigating the content and quality of online information on FM 8,12,27 . These studies reported that the most commonly searched contents are "what is fibromyalgia" and "Which are the symptoms of fibromyalgia?…”

Pain and Cortisol in Patients with Fibromyalgia: Systematic Review and Meta-Analysis

“…The reports selected for this review were required to fulfil strict inclusion criteria related to pain and cortisol and thus do not really reflect usual treatment interventions. According to Basavakumar et al, treatments most often used for FM are interventions on lifestyle, followed by medication and non-pharmacological treatments, such as physical therapy and physical exercise, along with the use of nutrition supplements [48].…”

What Information Are Patients Receiving from the Internet about the Operative and Nonoperative Management of Acute Appendicitis?

“…Google was used as it is by far the most commonly used search engine (holding 92.0% of the market share, with the next search engine, Bing, holding just 2.6%) [18]. A number of other studies about patient information on the Internet confirm that the vast majority of patient searches on the Internet are done using Google [19][20][21][22][23][24]. Only the results on the first page of Google search results were recorded, as it has been shown that <10% of users look beyond the first page [13,25].…”

“…Readability was assessed using an online tool (https://www. webfx.com/tools/read-able/) as described previously [19,20]. The tool combines 6 commonly used indices and provides an average grade level score.…”