Quality and Content of Online Patient Resources for Celiac Disease
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ORIGINAL ARTICLE
Quality and Content of Online Patient Resources for Celiac Disease Alison Buseck1 · Benjamin Lebwohl1 · Peter H. R. Green1 Received: 29 March 2020 / Accepted: 4 August 2020 © Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Background and Aims Patient-directed information on celiac disease has been reported to be of variable quality. We assessed the quantity and quality of information on blogs and Web sites intended to inform the layperson of celiac disease information. Methods We performed a cross-sectional study analyzing celiac disease blogs and Web sites intended for the layperson. We searched from 20 cities, resulting in 55 Web sites. These sites were analyzed for 38 criteria that considered relevant clinical information for people with celiac disease. Claims were classified as true, false, or not proven. The readability level of each Web site was determined. Results The 55 Web sites were categorized as national organizations, personal blogs, recipe-based blogs, or commercial/ marketing Web sites. Only 40% of Web sites contained more than 50% of criteria. Of 212 claims assessed, 97% were found to be accurate. National organizations included the most criteria, followed by recipe-based blogs, then personal blogs, and lastly commercial/marketing Web sites. Additionally, national organizations had the highest proportion of accurate claims, followed by personal blogs, then commercial/marketing Web sites, and recipe-based blogs with the most inaccurate information. The average readability level of overall was 9.7, above the recommended readability level for patient education materials. Conclusions A significant number of online claims regarding celiac disease were true, but the majority of patient-facing Web sites are missing large amounts of relevant information. This warrants efforts to improve the quality of medical information published online. Keywords Celiac disease · Blog · Comprehension
Introduction Celiac disease is an autoimmune disorder that develops in individuals who are genetically predisposed [1]. It is triggered by the ingestion of gluten, the protein component of wheat, rye, and barely [1]. It occurs in about 1% of people in most populations, and its prevalence has risen in recent decades. This increase seems to be due to a rise in incidence rather than an increase in awareness and testing [1]. A diagnosis for celiac disease typically requires an intestinal biopsy and an elevated celiac-related antibody test [1]. The only treatment for celiac disease is a gluten-free (GF) diet, and the symptoms improve for the majority of people who maintain this diet [1]. Various drugs that aim to improve symptoms or eliminate the need for a gluten-free diet are in * Peter H. R. Green [email protected] 1
developmental and testing stages [1]. Due to the broad list of celiac disease symptoms including diarrhea or constipation, vomiting, fatigue, abdominal pain, and others, people refer to online sources to self-diagnose and use these sources to determine a treat
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