{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,25]],"date-time":"2026-01-25T00:26:19Z","timestamp":1769300779740,"version":"3.49.0"},"reference-count":34,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2023,9,23]],"date-time":"2023-09-23T00:00:00Z","timestamp":1695427200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["The Laryngoscope"],"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Idiopathic subglottic stenosis is a rare disease, and time to diagnosis is often prolonged. In the United States, some estimate it takes an average of 9\u2009years for patients with similar rare disease to be diagnosed. Patient experience during this period is termed the <jats:italic>diagnostic odyssey<\/jats:italic>. The aim of this study is to use qualitative methods grounded in behavioral\u2010ecological conceptual frameworks to identify drivers of diagnostic odyssey length that can help inform efforts to improve health care for iSGS patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Qualitative study using semi\u2010structured interviews. Setting consisted of participants who were recruited from those enrolled in a large, prospective multicenter trial. We use directed content analysis to analyze qualitative semi\u2010structured interviews with iSGS patients focusing on their pathways to diagnosis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Overall, 30 patients with iSGS underwent semi\u2010structured interviews. The patient\u2010reported median time to diagnosis was 21\u2009months. On average, the participants visited four different health care providers. Specialists were most likely to make an appropriate referral to otolaryngology that ended in diagnosis. However, when primary care providers referred to otolaryngology, patients experienced a shorter diagnostic odyssey. The most important behavioral\u2010ecological factors in accelerating diagnosis were strong social support for the patient and providers' willingness to refer.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Several factors affected time to diagnosis for iSGS patients. Patient social capital was a catalyst in decreasing time to diagnosis. Patient\u2010reported medical paternalism and gatekeeping limited specialty care referrals extended diagnostic odysseys. Additional research is needed to understand the effect of patient\u2013provider and provider\u2013provider relationships on time to diagnosis for patients with iSGS.<\/jats:p><\/jats:sec><jats:sec><jats:title>Level of Evidence<\/jats:title><jats:p>4 <jats:italic>Laryngoscope<\/jats:italic>, 134:815\u2013824, 2024<\/jats:p><\/jats:sec>","DOI":"10.1002\/lary.31023","type":"journal-article","created":{"date-parts":[[2023,9,23]],"date-time":"2023-09-23T16:04:53Z","timestamp":1695485093000},"page":"815-824","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Navigating Pathways to Diagnosis in Idiopathic Subglottic Stenosis: A Qualitative Study"],"prefix":"10.1002","volume":"134","author":[{"given":"Cara","family":"Damico Smith","sequence":"first","affiliation":[{"name":"Department of Surgery University of Wisconsin\u2010Madison  Madison Wisconsin U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1043-8546","authenticated-orcid":false,"given":"Nainika","family":"Nanda","sequence":"additional","affiliation":[{"name":"Division of Otolaryngology University of Wisconsin\u2010Madison  Madison Wisconsin U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kemberlee","family":"Bonnet","sequence":"additional","affiliation":[{"name":"Department of Psychology Vanderbilt University  Nashville Tennessee U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Schlundt","sequence":"additional","affiliation":[{"name":"Department of Psychology Vanderbilt University  Nashville Tennessee U.S.A."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Anderson","sequence":"additional","affiliation":[{"name":"Living with Idiopathic Subglottic Stenosis Facebook Group 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