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Springer, Rheumatology International, 10(40), p. 1639-1647, 2020

DOI: 10.1007/s00296-020-04634-0

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Trends in idiopathic inflammatory myopathies: cross-sectional data from the German National Database

This paper was not found in any repository, but could be made available legally by the author.
This paper was not found in any repository, but could be made available legally by the author.

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Abstract

Abstract Objective To describe trends in outcomes among patients with idiopathic inflammatory myopathies (IIM) over two decades. Methods From 1997 to 2017, a total of 1079 IIM patients were documented in the National Database of the German Collaborative Arthritis Centers. Annual cross-sectional data on treatment, disease activity, patient-reported outcomes, hospitalization and employment were compared across the years. Information on phenotypes, organ manifestations and autoantibodies was collected for a subset to compare the assessment of global health, pain, fatigue and sleeping disorders. Results In 2017, significantly more IIM patients were assessed to be in low disease activity (94%) than in 1997 (59%), p < 0.01. Pain (p = 0.001), global health (p = 0.049), fatigue (p = 0.03) and sleeping disorders (p = 0.01) also improved since recording. Glucocorticoid use decreased from 84 to 58% (p < 0.01). Employment in patients < 65 years remained unchanged (53%), while early retirement (23–9%), hospitalization/year (34–18%) and sick leave (52–24%) decreased. A total of 186 patients with information on subtypes were classified as polymyositis (44%), dermatomyositis (33%), anti-synthetase syndrome (10%), overlapping-myositis (8%), inclusion body myositis (2%), necrotizing myositis (0.5%) and unspecific (3%). The most frequently reported symptoms were limitations in global health (60%), fatigue (57%) and sleeping disorders (51%), and all of them were most frequent in overlap-myositis. Pulmonary hypertension and cardiomyopathy were associated with poor outcomes regarding global health, daily activities and fatigue. Conclusion IIM patients report better outcomes than 20 years ago, along with good physician-reported disease control. Global health, fatigue and sleeping disorders are relevant patient-reported domains in IIM.