Abstract
Background/Objectives: To report patients' perspectives on the impact of adult-onset Still's disease (AOSD) on their health-related quality of life (HRQoL), work productivity and the effect of coronavirus (COVID)-19, using data from the PRO-AOSD (patient-reported outcomes adult-onset Still's disease) survey in Germany. Methods: The PRO-AOSD survey comprised blinded patient and physician surveys. An additional post-hoc analysis was performed to determine the relationship between HRQoL and disease activity (defined per C-reactive protein and Physician's Global Assessment data). The following outcomes were reported: patients' perspectives on the impact of AOSD on their physical and mental HRQoL and work productivity, outcomes for patients with active versus inactive disease, and the effect of COVID-19 on their general health and work productivity. Results: Adult patients with AOSD were recruited from 19 centers in Germany. A total of 124 patients were included: 59.7% (74/124) were female, and the mean age of diagnosis was 38.2 years. Reported HRQoL was impaired in almost all domains, especially physical health. For the 58 patients whose data enabled categorization into active (31.0%, 18/58) versus inactive disease (69.0%, 40/58), patients with active disease reported significantly worse outcomes in the following (p < 0.001): likelihood of perceiving their health as excellent or similar to other people's health, severity of pain in the past month, and the ability to complete strenuous activities. Although all patients were of working age, not all were employed (60.5%, 75/124). Many patients felt that compared to their peers, they were more burdened by the COVID-19 pandemic (33.9%) and were more afraid of contracting COVID-19 (49.2%). Conclusions: Patients with AOSD suffered from impaired HRQoL, which was worsened by active disease and the COVID-19 pandemic.