Significant gastrointestinal unmet needs in patients with systemic sclerosis: insights from a large international patient survey

DEAR EDITOR, The gastrointestinal (GI) tract is affected in the vast majority (>90%) of patients with SSc and is associated with significant disease-related morbidity and mortality [1–6]. However, the aetiopathogenesis of SSc-related GI disease currently remains ill-defined, and therefore treatment is usually informed by a symptomatic approach [7]. Furthermore, in the absence of large, SSc-specific randomized controlled trials, recommendations are largely based on expert opinion or the extrapolation of data from other GI patient populations [8]. Clinical experience clearly demonstrates that patients consider this to be an important unmet need, as their work and personal lives are often highly impacted by SSc-related GI complications. Against this background, we sought to refine the list of SSc GI research priorities by incorporating the viewpoints of patients living with this condition. Here we present a dedicated analysis of data acquired from a broader-ranging international survey that examined SSc patient perspectives related to the use of proton pump inhibitors (PPIs). This survey was developed in collaboration with a patient research partner with the aim of shaping the SSc GI research agenda. It included questions concerning the prevalence, impact and perceived unmet needs of SSc patients with GI disease and was disseminated through social media and SSc-focused patient organizations.