Ringing in the Patient Voice: Measuring Patients' Lived Experience of Dermatomyositis Symptoms.

Abstract

The development and validation of measures of disease activity, damage, and health-related quality of life (HRQOL) over the past 30 years has been fundamental in advancing research and care for patients with adult and juvenile idiopathic inflammatory myopathies (IIMs).¹ These efforts have resulted in the development of core set measures of disease activity and damage for myositis, and the American College of Rheumatology (ACR)/European Alliance of Associations for Rheumatology (EULAR)-endorsed Myositis Response Criteria, which have been successfully implemented in IIM clinical trials and which recently facilitated the US Food and Drug Administration licensure of intravenous immunoglobulin for dermatomyositis (DM).^2-5.