Jolene H Fisher1, Darragh O'Connor2, Alana M Flexman3, Shane Shapera1, Christopher J Ryerson2,4. 1. 1 Department of Medicine, University of Toronto, Toronto, Ontario, Canada; and. 2. 2 Department of Medicine. 3. 3 Department of Anesthesiology, and. 4. 4 Centre for Heart Lung Innovation, University of British Columbia, Vancouver, British Columbia, Canada.
Abstract
RATIONALE: Patients commonly use the Internet as a resource for health information; however, no studies have evaluated the online information about idiopathic pulmonary fibrosis (IPF). OBJECTIVES: We sought to determine the readability, content (compared with established guidelines), bias, and quality of online IPF resources. METHODS: We analyzed the first 200 hits for "idiopathic pulmonary fibrosis" in Google, Yahoo, and Bing. Each website was evaluated for content related to IPF features and treatments that are discussed in clinical guidelines. Website quality was assessed using the validated DISCERN instrument. MEASUREMENTS AND MAIN RESULTS: Eligibility criteria were met in 181 websites. The median reading grade level was 12. More content was provided in scientific resources (academic institutions or governmental organizations) and foundation/advocacy organization sites than in personal commentary (blog) sites; however, most sites provided incomplete and/or inaccurate information. Nonindicated and/or harmful pharmacotherapies for IPF were described as potential IPF treatments in 48% of websites and were most often recommended in foundation/advocacy organization websites. Azathioprine and corticosteroids were discussed as potential chronic treatments of IPF in 13.3 and 30.6% of the 98 websites that had been updated after publication of data demonstrating harm from these medications. Website quality (DISCERN score) was poor in all site types but was worse in news/media reports and personal commentary (blog) sites than in sites from scientific and foundation/advocacy organizations. CONCLUSIONS: Patient-directed online information on IPF is frequently incomplete, inaccurate, and outdated. There is no reliable method for patients to identify sites that provide appropriate information on IPF.
RATIONALE: Patients commonly use the Internet as a resource for health information; however, no studies have evaluated the online information about idiopathic pulmonary fibrosis (IPF). OBJECTIVES: We sought to determine the readability, content (compared with established guidelines), bias, and quality of online IPF resources. METHODS: We analyzed the first 200 hits for "idiopathic pulmonary fibrosis" in Google, Yahoo, and Bing. Each website was evaluated for content related to IPF features and treatments that are discussed in clinical guidelines. Website quality was assessed using the validated DISCERN instrument. MEASUREMENTS AND MAIN RESULTS: Eligibility criteria were met in 181 websites. The median reading grade level was 12. More content was provided in scientific resources (academic institutions or governmental organizations) and foundation/advocacy organization sites than in personal commentary (blog) sites; however, most sites provided incomplete and/or inaccurate information. Nonindicated and/or harmful pharmacotherapies for IPF were described as potential IPF treatments in 48% of websites and were most often recommended in foundation/advocacy organization websites. Azathioprine and corticosteroids were discussed as potential chronic treatments of IPF in 13.3 and 30.6% of the 98 websites that had been updated after publication of data demonstrating harm from these medications. Website quality (DISCERN score) was poor in all site types but was worse in news/media reports and personal commentary (blog) sites than in sites from scientific and foundation/advocacy organizations. CONCLUSIONS:Patient-directed online information on IPF is frequently incomplete, inaccurate, and outdated. There is no reliable method for patients to identify sites that provide appropriate information on IPF.
Authors: Mirjam J G van Manen; Michael Kreuter; Bernt van den Blink; Ute Oltmanns; Karin Palmowski; Eva Brunnemer; Simone Hummler; Nelleke C Tak; Leon van den Toorn; Jelle Miedema; Henk C Hoogsteden; Marlies S Wijsenbeek Journal: ERJ Open Res Date: 2017-02-14