Fibromyalgia Website Quality

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Many individuals living with Fibromyalgia will turn to the Internet for information. However, many of these individuals have expressed concern over the quality of the information found across various websites. Complaints range from poor writing quality to grossly inaccurate factual data. These concerns prompted a study to determine exactly what kind of information the public is getting when they search the internet for Fibromyalgia related facts.

 Dr. Lubna Daraz and others investigated the information needs and preferences of individuals living with Fibromyalgia.   Most of the individuals interviewed said they preferred to get the bulk of their information about Fibromyalgia from the Internet. But they had concerns over the lack of certain types of content, and they felt they needed more evidence based information. Dr. Daraz conducted a study to gain more in-depth information about the resources that are available for individuals with Fibromyalgia and if these resources are accurate and useful.

 Dr. Daraz and his team decided to analyze the websites that appeared on Google after they did a keyword search for the term “Fibromyalgia”. They examined the first 20 websites returned by Google, making sure each site provided information on Fibromyalgia, provided information for patients and caregivers and provided this information in English.

 They began looking at these sites in depth, taking note of their quality and their readability. The study used a tool called DISCERN to assess the overaall quality of these sites. This  assessment tool consists of 15 questions to evaluate a site. Each question is rated on a 1-5 point scale. However, the problem with the DISCERN tool was it did not include a lot of the criteria needed to assess for specific information relative to Fibromyalgia.

 Daraz’s team developed their own supplemental checklist to assess web health information. This tool was designed  for the general public to evaluate websites for quality health information. This quality checklist consisted of seven different categories. Then the study developed an overall rating protocol allowing the evaluation of the websites by using the total DISCERN score coupled with scoring as per their custom evaluation model.

 The readability of the sites were evaluated using the Flesch Reading Ease criteria. This evaluation tool uses a reading index score of 0-100. The closer the text is to 100, the easier it is to read. In addition to the Flesch Reading Ease criteria, this study also incorporated the Flesch-Kincaid Grade Level formula to calculate grade level. Anyone who wants to convey health information to the public should make sure it is on the 6th to 8th grade reading level.

 This study found that Fibromyalgia websites vary greatly in content, quality and readability. There were huge differences in the average scores from DISCERN, the Quality Checklist and the Flesch Reading Ease Test. The study found the good quality websites from a factual accuracy standpoint usually had poor readability. These sites required a reading grade level of 11 or higher and failed to present materials in a manner aimed at patient level readers.

 Another problem noted by this study was the lack of certain key information. The common content on these sites talked in general about symptoms, treatment and diagnosis. However, they left out important information that people really want to know such as Fibromyalgia focused research, alternative treatments and specialists who may be able to help. Few websites noted research based sources for article contents. Overall, this study found that online Fibromyalgia websites do not provide comprehensive information about this disease in a format most readers find accessible.

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1.   The quality of websites addressing fibromyalgia: an assessment of quality and readability using standardised tools

Lubna Daraz,1 Joy C MacDermid,1 Seanne Wilkins,1 Jane Gibson,2 and Lynn Shaw3

1School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada

2Institute for Work & Health, Toronto, Ontario, Canada

3School of Occupational Therapy, University of Western Ontario, London, Ontario, Canada

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