{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T06:01:04Z","timestamp":1792735264191,"version":"4.5.0"},"reference-count":26,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2024,2,29]],"date-time":"2024-02-29T00:00:00Z","timestamp":1709164800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2024,5]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Proton pump inhibitors (PPIs) are widely prescribed to treat gastroesophageal reflux disease (GERD) in Systemic Sclerosis (SSc). However, not all patients adequately respond to the treatment, and there are frequent concerns about the safety of long\u2010term use of PPIs. Our aim was to identify the main problems\/complaints of SSc patients on PPIs, as well as understand their unmet needs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>SSc patients treated with PPIs were invited through international patient associations and social media to participate in an online survey.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We gathered 301 valid responses from 14 countries (United Kingdom 19.3% and United States 70.4%). Multiple PPIs use (two: 30% and three: 21% in series) was common. The majority (89%) reported improvement in gastrointestinal symptoms from receiving PPIs. Side effects attributed to receiving PPIs were uncommon (19%); however, most (79%) were potentially concerned. Around half (58%) had received lifestyle information, and most (85%) had searched online for information about PPIs. Only in the minority (12%) had a surgical approach been discussed; however, half (46%) indicated that they would be willing to undergo surgery to resolve their GERD symptoms but had important concerns.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Despite the frequent use of PPIs in patients with SSc, there is significant heterogeneity in prescription, and combination therapy (PPIs plus other medication for acid reflux) is not uncommon (approximately 40%). Patients have significant concerns about PPIs side effects. Education about PPIs is often neglected, and patients very frequently use online sources to obtain information on drug treatment. A surgical approach is infrequently discussed, and patients fear this potential therapeutic approach.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.25280","type":"journal-article","created":{"date-parts":[[2023,12,19]],"date-time":"2023-12-19T03:07:01Z","timestamp":1702955221000},"page":"608-615","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["A Multinational Survey Investigating the Unmet Needs and Patient Perspectives Concerning Proton Pump Inhibitors in Systemic Sclerosis \u00a0"],"prefix":"10.1002","volume":"76","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2076-7319","authenticated-orcid":false,"given":"Giulia","family":"Bandini","sequence":"first","affiliation":[{"name":"Department of Experimental and Clinical Medicine, Division of Internal Medicine University of Florence, AOUC  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1105-5640","authenticated-orcid":false,"given":"Alessia","family":"Alunno","sequence":"additional","affiliation":[{"name":"Department of Clinical Medicine, Life Health and Environmental Sciences, Internal Medicine and Nephrology Division University of L'Aquila  L'Aquila Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Filipe O.","family":"Pinheiro","sequence":"additional","affiliation":[{"name":"Department of Rheumatology Centro Hospitalar Universit\u00e1rio de S\u00e3o Jo\u00e3o  Porto Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6806-3794","authenticated-orcid":false,"given":"Corrado","family":"Campochiaro","sequence":"additional","affiliation":[{"name":"Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR) IRCCS San Raffaele Hospital  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilaria","family":"Galetti","sequence":"additional","affiliation":[{"name":"FESCA (Federation of European Scleroderma Associations), Belgium, and GILS (Gruppo Italiano Lotta alla Sclerodermia)  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pietro","family":"Matucci\u2010Cerinic","sequence":"additional","affiliation":[{"name":"Department of Surgery, Division of Surgery and Transplantation University of Udine  Udine Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8990-859X","authenticated-orcid":false,"given":"Barbara","family":"Ruaro","sequence":"additional","affiliation":[{"name":"Department of Medical Surgical and Health Sciences, Pulmonology Unit University Hospital of Cattinara and University of Trieste  Trieste Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3278-8296","authenticated-orcid":false,"given":"Khadija","family":"El Aoufy","sequence":"additional","affiliation":[{"name":"Department of Health Science University of Florence  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria R.","family":"Melis","sequence":"additional","affiliation":[{"name":"Department of Health Science University of Florence  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alberto Moggi","family":"Pignone","sequence":"additional","affiliation":[{"name":"Department of Experimental and Clinical Medicine, Division of Internal Medicine University of Florence, AOUC  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silvia Bellando","family":"Randone","sequence":"additional","affiliation":[{"name":"Department of Experimental and Clinical Medicine, Division of Rheumatology University of Florence  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lorenzo","family":"Dagna","sequence":"additional","affiliation":[{"name":"Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR) IRCCS San Raffaele Hospital  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marco","family":"Matucci\u2010Cerinic","sequence":"additional","affiliation":[{"name":"Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR) IRCCS San Raffaele Hospital  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6461-8940","authenticated-orcid":false,"given":"Zsuzsanna H.","family":"McMahan","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Rheumatology University of Texas Health Science Center at Houston  Houston Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3361-4909","authenticated-orcid":false,"given":"Michael","family":"Hughes","sequence":"additional","affiliation":[{"name":"Northern Care Alliance NHS Foundation Trust, Salford Care Organisation, Salford, UK; 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