{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T21:22:00Z","timestamp":1762377720369,"version":"build-2065373602"},"reference-count":33,"publisher":"MDPI AG","issue":"19","license":[{"start":{"date-parts":[[2025,10,4]],"date-time":"2025-10-04T00:00:00Z","timestamp":1759536000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Novartis Pharma AG"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Background\/Objectives: This study aims to report and compare data from the PRO-AOSD (patient-reported outcomes adult-onset Still\u2019s 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\u2019 assessment of the patient\u2019s health state; physician-reported laboratory findings; pain; disease activity; symptoms; physicians\u2019 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\u2019 and physicians\u2019 interpretations of the same cases of AOSD. Prior Presentation: These data were presented at the German Congress of Rheumatology (DGRh; 30 August\u20132 September 2023; Leipzig, Germany).<\/jats:p>","DOI":"10.3390\/jcm14197034","type":"journal-article","created":{"date-parts":[[2025,10,6]],"date-time":"2025-10-06T13:33:41Z","timestamp":1759757621000},"page":"7034","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Evaluating the Divide Between Patients\u2019 and Physicians\u2019 Perceptions of Adult-Onset Still\u2019s Disease Cases: Insights from the PRO-AOSD Survey"],"prefix":"10.3390","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9419-1690","authenticated-orcid":false,"given":"Norbert","family":"Blank","sequence":"first","affiliation":[{"name":"Department of Internal Medicine V, Division of Rheumatology, University Hospital Heidelberg, 69120 Heidelberg, Germany"},{"name":"Center for Rare Diseases Heidelberg (ZSEHD), University Hospital Heidelberg, 69120 Heidelberg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8007-9905","authenticated-orcid":false,"given":"Ioana","family":"Andreica","sequence":"additional","affiliation":[{"name":"Rheumatology Research, Faculty of Medicine, Ruhr-Universit\u00e4t Bochum, 44780 Bochum, Germany"},{"name":"Internal Medicine and Rheumatology, Rheumazentrum Ruhrgebiet, 44649 Herne, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2569-2029","authenticated-orcid":false,"given":"J\u00fcrgen","family":"Rech","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine 3\u2014Rheumatology and Immunology, Friedrich-Alexander University (FAU) Erlangen-N\u00fcrnberg and Universit\u00e4tsklinikum Erlangen, 91054 Erlangen, Germany"},{"name":"Deutsches Zentrum f\u00fcr Immuntherapie (DZI), Friedrich-Alexander-Universit\u00e4t Erlangen-N\u00fcrnberg and Uniklinikum Erlangen, 91054 Erlangen, Germany"},{"name":"Center for Rare Diseases Erlangen (ZSEER), Friedrich-Alexander-Universit\u00e4t Erlangen-N\u00fcrnberg and Uniklinikum Erlangen, 91054 Erlangen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zekayi","family":"S\u00f6zen","sequence":"additional","affiliation":[{"name":"Novartis Pharma AG, CH-4056 Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9872-5282","authenticated-orcid":false,"given":"Eugen","family":"Feist","sequence":"additional","affiliation":[{"name":"Department of Rheumatology and Clinical Immunology, Helios Fachklinik Vogelsang-Gommern Klinik f\u00fcr Rheumatologie, 39245 Gommern, Germany"},{"name":"Experimental Rheumatology, Otto-von-Guericke Universit\u00e4t Magdeburg, 39106 Magdeburg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2025,10,4]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1748","DOI":"10.1136\/ard-2024-225853","article-title":"Systemic juvenile idiopathic arthritis and adult-onset Still\u2019s disease are the same disease: Evidence from systematic reviews and meta-analyses informing the 2023 EULAR\/PReS recommendations for the diagnosis and management of Still\u2019s disease","volume":"83","author":"Bindoli","year":"2024","journal-title":"Ann. 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