Evaluating the Divide Between Patients’ and Physicians’ Perceptions of Adult-Onset Still’s Disease Cases: Insights from the PRO-AOSD Survey

Background/Objectives: This study aims to report and compare data from the PRO-AOSD (patient-reported outcomes adult-onset Still’s disease) survey in patients with AOSD from the perspective of patients and their treating physicians. Methods: PRO-AOSD comprised blinded patient and physician surveys. The surveys were designed to assess perceived symptoms and physical impairment. Outcomes reported here include patient demographics; physicians’ assessment of the patient’s health state; physician-reported laboratory findings; pain; disease activity; symptoms; physicians’ treatment goals; and the impact of lifestyle factors on disease improvement. Results: Adult patients with AOSD were recruited from 19 centers in Germany. A total of 124 patients were included, with 74 (59.7%) females; the mean age was 45.5 years. The mean time from first symptom to diagnosis was 2 years, and the mean time was 7 years from diagnosis to survey completion (N = 123). Of 107 patients, most (81.3%) had inactive disease defined by CRP levels. At the time of the survey, around two-thirds of patients were receiving biologic therapy, with 84.1% (69/82) reporting an improvement in symptoms. Many patients had previously received antibiotics (47.6% [n = 58] and 30.4% [n = 37], per patient and physician reports, respectively). Persistent symptoms were reported more frequently by patients than by physicians, including back pain (39.5%), fatigue and weakness (38.7%), and joint inflammation (27.4%). Physicians classified 35.5% of patients as symptom-free. Patients reported exercise as having a positive impact on symptoms (52.4%), while stress (74.2%) and sleep deprivation (62.9%) were reported to worsen symptoms. Targeting systemic manifestations, such as the absence of fever (58.1%, n = 72), was considered the most important treatment goal by physicians. Conclusions: Data from PRO-AOSD highlight distinct differences between patients’ and physicians’ interpretations of the same cases of AOSD. Prior presentation: These data were presented at the German Congress of Rheumatology (DGRh; 30 August–2 September 2023; Leipzig, Germany).