{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T11:49:17Z","timestamp":1753876157316,"version":"3.41.2"},"reference-count":20,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2024,5,14]],"date-time":"2024-05-14T00:00:00Z","timestamp":1715644800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"DOI":"10.13039\/100000092","name":"National Library of Medicine","doi-asserted-by":"publisher","award":["R01LM011176"],"award-info":[{"award-number":["R01LM011176"]}],"id":[{"id":"10.13039\/100000092","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,1,7]]},"abstract":"<jats:title>Summary<\/jats:title>\n               <jats:p>Patients with chronic diseases have increasingly turned to social media to discuss symptoms and share the challenges they face with disease management. The primary aim of this study is to use naturally occurring data from X (formerly known as Twitter) to identify barriers to care faced by individuals affected by eosinophilic esophagitis (EoE). For this qualitative study, the X application programming interface with academic research access was used to search for posts that referenced EoE between 1 January 2019 and 10 August 2022. The posts were identified as being either related to barriers to care for EoE or not. Those related to barriers to care were further categorized by the type of barrier that was expressed. A total of 8636 EoE-related posts were annotated of which 12.1% were related to barriers to care in EoE. The themes that emerged about barriers to care included: dietary challenges, limited treatment options, lack of community support, lack of physician awareness of disease, misinformation, cost of care, lack of patient belief in disease or trust in physician, and limited access to care. Saturation of themes was achieved. This study highlights barriers to care in EoE using readily accessible social media data that is not derived from a curated research setting. Identifying these obstacles is key to improving care for this chronic disease.<\/jats:p>","DOI":"10.1093\/dote\/doae043","type":"journal-article","created":{"date-parts":[[2024,5,15]],"date-time":"2024-05-15T07:41:44Z","timestamp":1715758904000},"source":"Crossref","is-referenced-by-count":0,"title":["Exploring X: barriers to care for eosinophilic esophagitis"],"prefix":"10.1093","volume":"38","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1835-1381","authenticated-orcid":false,"given":"Shivani U","family":"Thanawala","sequence":"first","affiliation":[{"name":"Division of Gastroenterology and Hepatology, Perelman School of Medicine at the University of Pennsylvania , Philadelphia, PA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ari","family":"Klein","sequence":"additional","affiliation":[{"name":"Department of Biostatistics Epidemiology and Statistics, Perelman School of Medicine at the University of Pennsylvania , Philadelphia, PA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Krish","family":"Raval","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology and Hepatology, Perelman School of Medicine at the University of Pennsylvania , Philadelphia, PA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jesus Ivan Flores","family":"Amaro","sequence":"additional","affiliation":[{"name":"Department of Computational Biomedicine, Cedars-Sinai Medical Center , Los Angeles, CA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claire A","family":"Beveridge","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology , Hepatology, and Nutrition, , Cleveland, OH ,","place":["USA"]},{"name":"Digestive Diseases and Surgery Institute, Cleveland Clinic Foundation , Hepatology, and Nutrition, , Cleveland, OH ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amanda B","family":"Muir","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology, Hepatology and Nutrition, The Children's Hospital of Philadelphia , Philadelphia, PA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gary W","family":"Falk","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology and Hepatology, Perelman School of Medicine at the University of Pennsylvania , Philadelphia, PA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Graciela","family":"Gonzalez-Hernandez","sequence":"additional","affiliation":[{"name":"Department of Computational Biomedicine, Cedars-Sinai Medical Center , Los Angeles, CA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristle L","family":"Lynch","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology and Hepatology, Perelman School of Medicine at the University of Pennsylvania , Philadelphia, PA ,","place":["USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2024,5,14]]},"reference":[{"issue":"2","key":"2025011416565058600_ref1","doi-asserted-by":"crossref","first-page":"319","DOI":"10.1053\/j.gastro.2017.06.067","article-title":"Epidemiology and natural history of eosinophilic esophagitis","volume":"154","author":"Dellon","year":"2018","journal-title":"Gastroenterology"},{"issue":"25","key":"2025011416565058600_ref2","doi-asserted-by":"crossref","first-page":"2317","DOI":"10.1056\/NEJMoa2205982","article-title":"Dupilumab in adults and adolescents with eosinophilic esophagitis","volume":"387","author":"Dellon","year":"2022","journal-title":"N Engl J Med"},{"issue":"7","key":"2025011416565058600_ref3","doi-asserted-by":"crossref","first-page":"1483","DOI":"10.1016\/j.cgh.2019.08.050","article-title":"Rapid recurrence of eosinophilic esophagitis activity after successful treatment in the observation phase of a randomized, double-blind, double-dummy trial","volume":"18","author":"Dellon","year":"2020","journal-title":"Clin Gastroenterol Hepatol"},{"issue":"11","key":"2025011416565058600_ref4","doi-asserted-by":"crossref","first-page":"2678","DOI":"10.1097\/MIB.0000000000000951","article-title":"A survey of social media use and preferences in patients with inflammatory bowel disease","volume":"22","author":"Reich","year":"2016","journal-title":"Inflamm Bowel Dis"},{"issue":"3","key":"2025011416565058600_ref5","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1007\/s11892-020-1294-3","article-title":"Social media in the diabetes community: a novel way to assess psychosocial needs in people with diabetes and their caregivers","volume":"20","author":"Oser","year":"2020","journal-title":"Curr Diab Rep"},{"volume-title":"Social Media Users - Global Demographics (2023)","year":"2023","author":"Shewale","key":"2025011416565058600_ref6"},{"issue":"6","key":"2025011416565058600_ref7","doi-asserted-by":"crossref","DOI":"10.1093\/dote\/doab073","article-title":"What patients with eosinophilic esophagitis may not share with their providers: a qualitative assessment of online health communities","volume":"35","author":"Chang","year":"2022","journal-title":"Dis Esophagus"},{"issue":"11","key":"2025011416565058600_ref8","doi-asserted-by":"crossref","DOI":"10.1093\/dote\/doab059","article-title":"Hashing out current social media use in eosinophilic esophagitis","volume":"34","author":"Thanawala","year":"2021","journal-title":"Dis Esophagus"},{"key":"2025011416565058600_ref9","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1016\/j.copsyc.2019.06.025","article-title":"Self-disclosure versus self-presentation on social media","volume":"31","author":"Schlosser","year":"2020","journal-title":"Curr Opin Psychol"},{"issue":"3","key":"2025011416565058600_ref10","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1089\/1094931041291295","article-title":"The online disinhibition effect","volume":"7","author":"Suler","year":"2004","journal-title":"Cyberpsychol Behav"},{"key":"2025011416565058600_ref11","doi-asserted-by":"crossref","DOI":"10.1002\/9781119410867","volume-title":"Qualitative research in health care","author":"Pope","year":"2020"},{"issue":"9","key":"2025011416565058600_ref12","doi-asserted-by":"crossref","first-page":"769","DOI":"10.1097\/MCG.0b013e3182166a5a","article-title":"Qualitative assessment of patient-reported outcomes in adults with eosinophilic esophagitis","volume":"45","author":"Taft","year":"2011","journal-title":"J Clin Gastroenterol"},{"issue":"6","key":"2025011416565058600_ref13","doi-asserted-by":"crossref","first-page":"1808","DOI":"10.1007\/s10620-020-06438-5","article-title":"Motivations, barriers, and outcomes of patient-reported shared decision making in eosinophilic esophagitis","volume":"66","author":"Chang","year":"2021","journal-title":"Dig Dis Sci"},{"issue":"7","key":"2025011416565058600_ref14","doi-asserted-by":"crossref","first-page":"1690","DOI":"10.1016\/j.cgh.2023.03.006","article-title":"Development of a practical guide to implement and monitor diet therapy for eosinophilic esophagitis","volume":"21","author":"Chang","year":"2023","journal-title":"Clin Gastroenterol Hepatol"},{"issue":"2","key":"2025011416565058600_ref15","doi-asserted-by":"crossref","first-page":"208","DOI":"10.1016\/j.dld.2022.05.004","article-title":"Treatment trends for eosinophilic esophagitis and the other eosinophilic gastrointestinal diseases: systematic review of clinical trials","volume":"55","author":"Visaggi","year":"2023","journal-title":"Dig Liver Dis"},{"issue":"4","key":"2025011416565058600_ref16","doi-asserted-by":"crossref","first-page":"1365","DOI":"10.1016\/j.jaci.2017.08.038","article-title":"Step-up empiric elimination diet for pediatric and adult eosinophilic esophagitis: the 2-4-6 study","volume":"141","author":"Molina-Infante","year":"2018","journal-title":"J Allergy Clin Immunol"},{"issue":"5","key":"2025011416565058600_ref17","doi-asserted-by":"crossref","first-page":"408","DOI":"10.1016\/S2468-1253(23)00012-2","article-title":"One-food versus six-food elimination diet therapy for the treatment of eosinophilic oesophagitis: a multicentre, randomised, open-label trial","volume":"8","author":"Kliewer","year":"2023","journal-title":"Lancet Gastroenterol Hepatol"},{"issue":"11","key":"2025011416565058600_ref18","doi-asserted-by":"crossref","first-page":"1772","DOI":"10.14309\/ajg.0000000000001950","article-title":"Diagnostic delay in patients with eosinophilic esophagitis has not changed since the first description 30 years ago: diagnostic delay in eosinophilic esophagitis","volume":"117","author":"Murray","year":"2022","journal-title":"Am J Gastroenterol"},{"issue":"3","key":"2025011416565058600_ref19","doi-asserted-by":"crossref","first-page":"223","DOI":"10.1111\/apt.13676","article-title":"Allergy tests do not predict food triggers in adult patients with eosinophilic oesophagitis. A comprehensive prospective study using five modalities","volume":"44","author":"Philpott","year":"2016","journal-title":"Aliment Pharmacol Ther"},{"issue":"3","key":"2025011416565058600_ref20","doi-asserted-by":"crossref","first-page":"74","DOI":"10.5153\/sro.3001","article-title":"Knowing the tweeters: deriving sociologically relevant demographics from twitter","volume":"18","author":"Sloan","year":"2013","journal-title":"Sociological Research Online"}],"container-title":["Diseases of the Esophagus"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/dote\/article-pdf\/38\/1\/doae043\/57655116\/doae043.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/dote\/article-pdf\/38\/1\/doae043\/57655116\/doae043.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,14]],"date-time":"2025-01-14T16:57:09Z","timestamp":1736873829000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/dote\/article\/doi\/10.1093\/dote\/doae043\/7672960"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,5,14]]},"references-count":20,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2025,1,7]]}},"URL":"https:\/\/doi.org\/10.1093\/dote\/doae043","relation":{},"ISSN":["1120-8694","1442-2050"],"issn-type":[{"type":"print","value":"1120-8694"},{"type":"electronic","value":"1442-2050"}],"subject":[],"published-other":{"date-parts":[[2025,2]]},"published":{"date-parts":[[2024,5,14]]},"article-number":"doae043"}}