Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Weiß M, Holzer MT, Muehlensiepen F, Ignatyev Y, Fiehn C, Bauhammer J, Schmidt J, Schlüter S, Dihkan A, Scheibner D, Schneider U, Valor-Mendez L, Corte G, Gupta L, Chinoy H, Lundberg I, Cavagna L, Distler J, Schett G, Knitza J (2023)

Publication Type: Journal article

Publication year: 2023

Journal

Book Volume: 43

Pages Range: 1925-1934

Journal Issue: 10

DOI: 10.1007/s00296-023-05372-9

Abstract

Antisynthease syndrome (ASSD) is a rare, complex and understudied autoimmune disease. Internet-based studies can overcome barriers of traditional on-site research and are therefore very appealing for rare diseases. The aim of this study was to investigate patient-reported symptoms, diagnostic delay, symptoms, medical care, health status, working status, disease knowledge and willingness to participate in research of ASSD patients by conducting an international web-based survey. The multilingual questionnaire was created by an international group of rheumatologists and patients and distributed online. 236 participants from 22 countries completed the survey. 184/236 (78.0%) were female, mean age (SD) was 49.6 years (11.3) and most common antisynthetase antibody was Jo-1 (169/236, 71.6%). 79/236 (33.5%) reported to work full-time. Median diagnostic delay was one year. The most common symptom at disease onset was fatigue 159/236 (67.4%), followed by myalgia 130/236 (55.1%). The complete triad of myositis, arthritis and lung involvement verified by a clinician was present in 42/236 (17.8%) at disease onset and in 88/236 (37.3%) during the disease course. 36/236 (15.3%) reported to have been diagnosed with fibromyalgia and 40/236 (16.3%) with depression. The most reported immunosuppressive treatments were oral corticosteroids 179/236 (75.9%), followed by rituximab 85/236 (36.0%). 73/236 (30.9%) had received physiotherapy treatment. 71/236 (30.1%) reported to know useful online information sources related to ASSD. 223/236 (94.5%) were willing to share health data for research purposes once a year. Our results reiterate that internet-based research is invaluable for cooperating with patients to foster knowledge in rare diseases.

Authors with CRIS profile

Involved external institutions

Universitätsklinikum Hamburg-Eppendorf (UKE) Germany (DE) Medizinische Hochschule Brandenburg "Theodor Fontane" / Brandenburg Medical School "Theodor Fontane" Germany (DE) Deutsche Gesellschaft für Muskelkranke (DGM) Germany (DE) Salford Royal Hospital United Kingdom (GB) Karolinska University Hospital / Karolinska Universitetssjukhuset Sweden (SE) Swedish Rheumatism Association Sweden (SE) Charité - Universitätsmedizin Berlin Germany (DE) The Royal Wolverhampton NHS Trust / Royal Wolverhampton Hospitals NHS Trust United Kingdom (GB) Policlinico San Matteo Pavia Fondazione IRCCS Italy (IT)

How to cite

APA:

Weiß, M., Holzer, M.T., Muehlensiepen, F., Ignatyev, Y., Fiehn, C., Bauhammer, J.,... Knitza, J. (2023). Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey. Rheumatology International, 43(10), 1925-1934. https://doi.org/10.1007/s00296-023-05372-9

MLA:

Weiß, Marina, et al. "Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey." Rheumatology International 43.10 (2023): 1925-1934.

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