Online Information About Fibromyalgia is Inconsistent, Incomplete, Misinterpreted, Study Finds

Online Information About Fibromyalgia is Inconsistent, Incomplete, Misinterpreted, Study Finds

Most information about fibromyalgia available on the internet is incomplete and may be difficult to understand for laypersons, especially as it relates to symptoms, causes, associated conditions, and treatments, a research study reveals.

Websites developed by non-profit organizations are the ones that provide the most complete information, researchers found.

These findings were described in a report, “Accuracy, completeness and accessibility of online information on fibromyalgia,” published in the journal Rheumatology International.

Fibromyalgia is a chronic disease characterized by widespread pain and fatigue, but it also has been associated with cognitive impairments and affective symptoms including mood changes, depression, and anxiety disorders. Studies have demonstrated that several environmental and clinical factors may contribute to the development of fibromyalgia.

The underlying mechanisms involved in fibromyalgia development and progression are still poorly understood. This, added to the multifaceted nature of this disease, makes diagnosis a challenge for physicians.

It is estimated that in each 20-25 individuals one person is affected by fibromyalgia. However, many more may endure this life-changing disease due to lack of awareness and absence of a formal diagnosis.

“Individuals with fibromyalgia can be easily dismissed, stigmatized, and left alone to self-manage their illness,” researcit hers wrote.

For many fibromyalgia patients is preferable to look for information online, where they won’t feel the impact of lack of understanding and support from others. Indeed, recent reports suggest “fibromyalgia is the most common medical search term within the U.K., with fibromyalgia symptoms of primary interest according to Google trends on [Aug. 14, 2018],” researchers reported.

Although online information can be very helpful for patients to better understand their disease and treatment options, websites may offer incomplete information or in forms that can be misinterpreted.

A team led by researchers from the Brighton and Sussex Medical School in the U.K., reviewed the completeness and trustworthiness of available online information on fibromyalgia. They did an online search for “fibromyalgia and analyzed 148 webpages among the first 200 results.

Within these pages, 56% were professional websites from hospitals, universities, and from professionals with a degree in a medical field. However, such professional webpages where not within the top 10 Google results, while websites from news outlets and not-profit organizations were more represented.

Across the different webpages, a total of 12 symptoms were reported, with pain and fatigue being mentioned most frequently. Most pages covered the symptoms associated with fibromyalgia fairly well; still, 21% of the pages mentioned only zero to one symptoms.

Websites from non-profit organizations were the ones that described the highest number of symptoms. These were followed by news, health portals, commercial, government, professional, and other websites.

As for what causes this disease, the coverage was much poorer, with very few websites mentioning more than one cause.

The type of treatments most frequently mentioned in the analyzed webpages were those related to lifestyle interventions, followed by medications and non-pharmacological therapies, including cognitive and behavioral therapy, physiotherapy, counseling, and occupational therapy. Some websites also mentioned complementary and alternative medicine treatment strategies and dietary supplements.

These findings suggest that “the Google algorithm may rank webpages according to the completeness of information.”

In general, the information on these websites was, to some extent, poor. Only 63 of the websites (43%) offered well-supported information. Also, the majority of pages were difficult to understand, with only 8% meeting the recommended readability. News webpages were the ones that had significantly better readability compared to professional websites, or other pages.

“Our findings suggest that fibromyalgia webpages may misinform those that rely on them,” researchers wrote. “The most complete webpages tend to be those from not-for-profit organizations,” they said.

Improving the content of the webpages in order to provide complete information with respect to symptoms, causes, associated conditions, and treatment is important for fibromyalgia patients.

“Improvements to these areas may (…) aid patients in contributing to treatment decisions” and help “lessen the stigma these individuals are known to face by helping the general public understand associated limitations,” researchers stated.

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