{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T17:31:03Z","timestamp":1762363863957,"version":"build-2065373602"},"reference-count":37,"publisher":"MDPI AG","issue":"21","license":[{"start":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T00:00:00Z","timestamp":1762300800000},"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: To report patients\u2019 perspectives on the impact of adult-onset Still\u2019s 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\u2019s 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\u2019s Global Assessment data). The following outcomes were reported: patients\u2019 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 &lt; 0.001): likelihood of perceiving their health as excellent or similar to other people\u2019s 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.<\/jats:p>","DOI":"10.3390\/jcm14217848","type":"journal-article","created":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T17:06:06Z","timestamp":1762362366000},"page":"7848","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Assessment of Health-Related Quality of Life in Patients with Active Versus Inactive Adult-Onset Still\u2019s Disease: Data from the PRO-AOSD Survey During the COVID-19 Pandemic"],"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":"Division of Rheumatology, Department of Internal Medicine V, 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":"Department of Rheumatology, Ruhr-Universit\u00e4t Bochum, 44780 Bochum, Germany"},{"name":"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":[[2025,11,5]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"2050313x241233197","DOI":"10.1177\/2050313X241233197","article-title":"Association between adult-onset still\u2019s disease and COVID-19: A report of two cases and brief review","volume":"12","year":"2024","journal-title":"SAGE Open Med. 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