A multinational survey investigating the unmet needs and patient perspectives concerning Proton Pump Inhibitors in Systemic Sclerosis-Reference-Cited by-同舟云学术

A multinational survey investigating the unmet needs and patient perspectives concerning Proton Pump Inhibitors in Systemic Sclerosis

Published:2023-12-18 Issue: Volume: Page:
ISSN:2151-464X
Container-title:Arthritis Care & Research
language:en
Short-container-title:Arthritis Care & Research

Author:

Bandini Giulia¹^ORCID,Alunno Alessia²^ORCID,O Pinheiro Filipe³,Campochiaro Corrado⁴^ORCID,Galetti Ilaria⁵,Matucci Cerinic Pietro⁶,Ruaro Barbara⁷^ORCID,El Aoufy Khadija⁸^ORCID,Melis Maria R⁹,Moggi Pignone Alberto¹,Bellando Randone Silvia⁹,Dagna Lorenzo⁴,Matucci Cerinic Marco⁴,McMahan Zsuzsanna H¹⁰^ORCID,Hughes Michael¹¹¹²

Affiliation:

1. University of Florence, Department of Experimental and Clinical Medicine, Division of Internal Medicine, AOUC Firenze Italy

2. University of L'Aquila, Department of Clinical Medicine, Life Health and Environmental Sciences, Internal Medicine and Nephrology Division, ASL1 Avezzano‐Sulmona‐L'Aquila L'Aquila Italy

3. Centro Hospitalar Universitário de São João, Department of Rheumatology Porto Portugal

4. IRCCS San Raffaele Hospital, Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR), Milan Italy

5. FESCA (Federation of European Scleroderma Associations) Belgium, GILS (Gruppo Italiano, Lotta alla Sclerodermia) Italy

6. University of Udine, Division of Surgery and Transplantation, Department of Surgery Udine Italy

7. Pulmonology Unit, Department of Medical Surgical and Health Sciences, University Hospital of Cattinara University of Trieste Trieste Italy

8. University of Florence, Department of Health Science Firenze Italy

9. University of Florence, Department of Experimental and Clinical Medicine, Division of Rheumatology Firenze Italy

10. University of Texas Health Science Center at Houston, Department of Medicine, Division of Rheumatology Houston TX USA

11. Northern Care Alliance NHS Foundation Trust, Salford Care Organisation Salford UK

12. Division of Musculoskeletal and Dermatological Sciences The University of Manchester, Manchester Academic Health Science Centre Manchester UK

Abstract

ObjectiveProton Pump Inhibitors (PPIs) are widely used 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‐term use of PPIs. Our aim was to identify the main problems/complaints of SSc patients on PPIs, as well as understand their unmet needs.MethodsSSc patients treated with PPIs were invited through international patient associations and social media to participate in an online survey.ResultsWe gathered 301 valid responses from 14 countries (UK 19.3% and US 70.4%). Multiple PPIs use (two: 30% and three: 21% in series) was common. The majority (89%) reported improvement in GI symptoms from PPIs. Side effects attributed to 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.ConclusionDespite the frequent use of PPIs in SSc, there is significant heterogeneity in use, and combination therapy (PPIs plus other medication for acid reflux) is not uncommon (~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.This article is protected by copyright. All rights reserved.

Publisher

Wiley

Subject

Rheumatology