{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,10]],"date-time":"2026-04-10T02:55:43Z","timestamp":1775789743926,"version":"3.50.1"},"reference-count":32,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2020,9,29]],"date-time":"2020-09-29T00:00:00Z","timestamp":1601337600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["The Laryngoscope"],"published-print":{"date-parts":[[2021,8]]},"abstract":"<jats:sec><jats:title>Objectives<\/jats:title><jats:p>To determine the factors that shape utilization of social media\u2010based online support communities (OSCs) and study the influence of these communities on medical decision\u2010making in patients with Idiopathic Subglottic Stenosis (iSGS).<\/jats:p><\/jats:sec><jats:sec><jats:title>Study design<\/jats:title><jats:p>Survey study.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A survey investigating OSC use was sent to the 1,056 members of the North American Airway Collaborative (NoAAC) iSGS<jats:sup>1000<\/jats:sup> cohort in January 2018. Responses were merged with the existing NoAAC data set containing extensive demographic data, disease\u2010specific history, and responses to validated patient\u2010reported outcome measures.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 755 individuals with iSGS and mean age of 51.8\u2009\u00b1\u200911.6\u2009years were included (99% female, 98% white, 63% college educated) and 58% were OSC users. Younger age, female gender, and college education were each associated with OSC use (<jats:italic>P<\/jats:italic>\u00a0&lt;\u2009.05). Users spent 2.5\u2009\u00b1\u20093.3\u2009hours per week on the platforms. Time spent on OSC was not associated with total number of prior treatments. Higher disease anxiety (FoP\u2010Q, <jats:italic>R<\/jats:italic>\u00a0=\u20090.26, <jats:italic>P<\/jats:italic>\u00a0&lt;\u2009.001), lower social support (MOS, <jats:italic>R<\/jats:italic>\u00a0=\u2009\u22120.12, <jats:italic>P<\/jats:italic>\u00a0=\u2009.037), and lower level of shared\u2010decision\u2010making with the treating physician (SDM\u2010Q9, <jats:italic>R<\/jats:italic>\u00a0=\u2009\u22120.16, <jats:italic>P<\/jats:italic>\u00a0=\u2009.007) were weakly associated with more hours spent engaging an OSC. OSC use influenced treatment and physician choice in 35% and 26% of users, respectively. Increased time spent on OSC use was associated with increased influence on patient medical decisions regarding treatment, surgery, and physician choice (<jats:italic>P<\/jats:italic>\u00a0&lt;\u2009.05).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>OSC engagement is common in patients with iSGS. Disease anxiety, social support, and relationship with the physician may influence OSC utilization. More OSC engagement weakly associated with greater OSC influence on patient medical decision\u2010making.<\/jats:p><\/jats:sec><jats:sec><jats:title>Level of Evidence<\/jats:title><jats:p>NA. <jats:italic>Laryngoscope<\/jats:italic>, 131:1821\u20131827, 2021<\/jats:p><\/jats:sec>","DOI":"10.1002\/lary.29110","type":"journal-article","created":{"date-parts":[[2020,9,29]],"date-time":"2020-09-29T12:55:38Z","timestamp":1601384138000},"page":"1821-1827","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Utilization and Influence of Online Support Communities in Idiopathic Subglottic Stenosis Patients"],"prefix":"10.1002","volume":"131","author":[{"given":"Sunil P.","family":"Verma","sequence":"first","affiliation":[{"name":"Department of Otolaryngology\u2013Head and Neck Surgery University of California  Irvine California U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0045-2547","authenticated-orcid":false,"given":"Khodayar","family":"Goshtasbi","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology\u2013Head and Neck Surgery University of California  Irvine California U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lynne D.","family":"Berry","sequence":"additional","affiliation":[{"name":"Department of Quantitative Science Vanderbilt University Medical Center  Nashville Tennessee U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Anderson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David O.","family":"Francis","sequence":"additional","affiliation":[{"name":"Division of Otolaryngology, Department of Surgery University of Wisconsin  Madison Wisconsin U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0078-1305","authenticated-orcid":false,"given":"Alexander","family":"Gelbard","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology\u2010Head and Neck Surgery Vanderbilt University  Nashville Tennessee U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,9,29]]},"reference":[{"key":"e_1_2_6_2_1","unstructured":"FoxS. 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