Sterniste Georg, Hackner Klaus, Moazedi-Fürst Florentine, Grasl Marie, Idzko Marco, Shao Guangyu, Guttmann-Ducke Claudia, Talakić Emina, Prosch Helmut, Lohfink-Schumm Sylvia, Gabriel Michael, Lim Clarice, Hochreiter Johann, Bucher Brigitte, Böckle Barbara C, Kiener Hans Peter, Duftner Christina, Kastrati Kastriot, Rath Eva, Funk Marion, Löffler-Ragg Judith, Steinmaurer Monika, Kovacs Gabor, Verheyen Nicolas, Flick Holger, Antlanger Marlies, Traxler Gerhard, Tatscher Elisabeth, Zwick Ralf Harun, Lang David
Abteilung für Innere Medizin und Pneumologie, Klinik Floridsdorf, 1210, Wien, Österreich.
Klinische Abteilung für Pneumologie, Universitätsklinikum Krems, Karl Landsteiner Privatuniversität für Gesundheitswissenschaften, 3500, Krems, Österreich.
Wien Klin Wochenschr. 2024 Oct;136(Suppl 17):669-687. doi: 10.1007/s00508-024-02444-z. Epub 2024 Oct 9.
In many cases sarcoidosis is a multisystemic disease that requires interdisciplinary medical cooperation in the diagnostics, treatment and medical care during follow-up. Due to the often chronic course, it is of utmost importance to include patients with their priorities and wishes at an early stage and extensively in disease management and to establish a shared decision making whenever possible. In the process of writing this joint position paper, the expert group on interstitial and orphan lung diseases of the Austrian Society for Pulmonology and the working group on rheumatological lung disorders of the Austrian Society for Rheumatology and Rehabilitation sought to include patient advocacy groups as well as experts for rare organ manifestations of sarcoidosis. This position paper is not only meant to reflect current scientific and clinical standards but should also focus the national expertise and by networking and exchange to be a first step to strengthen cooperation between stakeholders to ultimately improve care for patients with sarcoidosis.
在许多情况下,结节病是一种多系统疾病,在诊断、治疗及随访期间的医疗护理方面需要跨学科的医学合作。由于其病程往往呈慢性,在疾病管理的早期就尽可能广泛地将患者及其优先事项和意愿纳入其中,并尽可能建立共同决策,这至关重要。在撰写本联合立场文件的过程中,奥地利肺病学会间质性和罕见肺病专家组以及奥地利风湿病学与康复学会风湿性肺病工作组力求纳入患者权益倡导团体以及结节病罕见器官表现方面的专家。本立场文件不仅旨在反映当前的科学和临床标准,还应聚焦国家专业知识,并通过建立联系和交流,迈出加强利益相关者之间合作的第一步,最终改善结节病患者的护理。