Abstract
INTRODUCTION: It is important to understand the differences in patient-physician perceptions and factors affecting satisfaction with treatment in patients with systemic sclerosis (SSc). METHODS: This web-based survey (conducted in Japan in March 2023) targeted patients aged ≥ 18 years with SSc and physicians in hospitals with ≥ 20 beds and seeing ≥ 3 patients with SSc monthly. Physicians and patients answered similar questions. RESULTS: Responders were 301 patients (63.8% female; 47.5% limited cutaneous SSc; 44.9% diffuse cutaneous SSc) and 129 physicians (51.2% rheumatologists; 20.9% dermatologists). The most common problematic symptoms reported by patients having each symptom were Raynaud's phenomenon (RP) (59.5%), skin tightening (47.4%), and malaise (45.5%). Physicians also perceived RP as the common problematic symptoms (46.5%). Conversely, there was a large gap in the perception of malaise as problematic (5.4%). There was a ≥ 20% difference in the percentage of respondents who felt that treatments improved symptoms of reflux esophagitis (48.8% in patients vs. 76.7% in physicians), dysphagia (25.0% vs. 52.7%), constipation (35.1% vs. 62.8%), diarrhea (36.1% vs. 62.8%), and pain (47.6% vs. 69.0%). Patient characteristics associated with high satisfaction with treatment included treatment responsiveness, age ≥ 50 years, being anti-topoisomerase I antibody positive, having dermatological or digestive symptoms as problematic symptoms, and not feeling they should have seen their physician earlier. CONCLUSIONS: Patients and physicians had different perceptions of symptoms and treatment response. Patients' perception of improvement affected their satisfaction with treatment. Reviewing treatment goals and content between patients and physicians is necessary to improve treatment satisfaction. TRIAL REGISTRATION: UMIN000050368.