A MULTINATIONAL SURVEY INVESTIGATING THE UNMET NEEDS AND PATIENT PERSPECTIVES CONCERNING PROTON PUMP INHIBITORS IN SYSTEMIC SCLEROSIS

G. Bandini, A. Alunno, F. Oliveira Pinheiro, C. Campochiaro, I. Galetti, P. Matucci Cerinic, B. Ruaro, L. Dagna, M. Matucci-Cerinic, Z. Mcmahan, M. HughesUniversity of Florence, Division of Internal Medicine, Department of Experimental and Clinical Medicine, Florence, Italy University of L’Aquila, Internal Medicine and Nephrology Division, Department of Life Health and Environmental Science, L’Aquila, Italy Centro Hospitalar Universitário de São João, Department of Rheumatology, Porto, Portugal IRCCS San Raffaele Hospital, Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR), Milan, Italy FESCA (Federation of European Scleroderma Associations) Belgium, GILS (Gruppo Italiano Lotta alla Sclerodermia), Department of Rheumatology, Milan, Italy University of Udine, Division of Surgery and Transplantation, Department of Surgery, Udine, Italy University of Trieste, Pulmonology Unit, Department of Medical Surgical and Health Sciences, Trieste, Italy University of Florence, Division of Rheumatology, Department of Experimental and Clinical Medicine, Florence, Italy Johns Hopkins University, Division of Rheumatology, Department of Medicine, Baltimore, MD, United States of America Salford Care Organisation and The University of Manchester, Department of Rheumatology, Manchester, United Kingdom  Background Gastrointestinal (GI) complications are a major cause of morbidity and mortality in systemic sclerosis (SSc) [1]. Proton pump inhibitors (PPIs) are widely used to treat gastroesophageal reflux disease in SSc. However, not all patients respond adequately to these drugs, and concerns about the safety of their long-term use of PPI’s exist in the general population [2]. Objectives To identify patients’ unmet needs and perspectives concerning PPI therapy. Methods An online survey in the English language targeting patients with SSc treated with PPI was developed and distributed through international patient associations and social media. The survey was launched on 4 November 2022 and kept open for 4 weeks. Results Of 416 people starting the survey, responses from 301 subjects with self-reported SSc from 14 countries (US 70.4% and UK 19.3%) were evaluable. The majority of patients were between 30-70 years of age and were female (95%). The most frequent patient-reported symptoms were acid reflux (97%), dysphagia (60%), nausea, vomiting and the regurgitation of food or phlegm (>60%). 83% of patents had undergone at least 1 invasive test to diagnose gastroesophageal reflux disease (e.g., upper endoscopy). The most commonly prescribed PPIs were omeprazole (62%), esomeprazole (24%), and pantoprazole (10%). One third of patients (35%) had only taken one PPI, whereas the use of various PPI’s (in series) was required by the majority (two PPIs: 30%, three PPIs: 21%). Daily PPI (46%) vs twice daily PPI regimens (47%) were divided equally among respondents. When on PPI, the majority of patients (89%) reported an improvement of GI symptoms when taking PPI, especially for symptoms of gastroesophageal reflux disease (94%). Only 19% experienced side effects from PPIs use, weak bones (osteoporosis) and calcium formation (calcinosis) being the most frequent. Half of patients (47%) experienced a return of symptoms despite initial improvement on PPI. Combination therapy (PPI plus other medication for reflux disease) was required for the optimal management of reflux disease in 41% of patients and was often deemed more beneficial than PPI monotherapy (72%). Many patients (83%) were worried that GI symptoms would return following PPI discontinuation. Furthermore, 79% of patients were worried about side effects from long-term use PPI, particularly the development of ‘weak bones (i.e., osteoporosis)’ (66%), kidney problems (55%), calcium formation (i.e., calcinosis) (39%), and cardiovascular disease (38%). PPIs were prescribed by a healthcare professional in 92% of respondents (8% bought over-the counter). Financial reimbursement for PPIs was only provided in around two-thirds of patients (64%). Only 58% of patients received information on lifestyle and diet to manage GI symptoms before starting PPI. Furthermore, the majority of patients (85%) obtained information about PPIs online. In only 12% of cases, a surgical approach to manage upper GI symptoms was discussed (rheumatologist or gastroenterologist). However, 46% of patients expressed their approval to undergo surgery (e.g., fundoplication) to resolve their reflux symptoms; however, many (80%) were worried about possible complications. Conclusion Our study benchmarks the importance of gastroesophageal symptoms in patients with SSc and the frequent use of PPIs. There is significant heterogeneity in the use of PPI in SSc and combination therapy is not uncommon. Patients live with great uncertainty including PPI side effects. Education about PPIs is often neglected, and patients rely on online information. A surgical approach is still not widely considered as a therapeutic option. References Sjogren RW. Gastrointestinal features of scleroderma. Curr Opin Rheumatol 1996;8:569-75. Hughes M, et al. Proton pump inhibitors in systemic sclerosis: a reappraisal to optimize treatment of gastro-oesophageal reflux disease. Lancet Rheumatol 2022;4 e795-e803. Acknowledgements: NIL. Disclosure of Interests None Declared. Keywords: Gastrointestinal tract, Systemic sclerosis DOI: 10.1136/annrheumdis-2023-eular.5982Citation: , volume 82, supplement 1, year 2023, page 1005Session: Scleroderma, myositis and related syndromes (Poster View)