A Multinational Survey Investigating the Unmet Needs and Patient Perspectives Concerning Proton Pump Inhibitors in Systemic Sclerosis  

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.