Discordance Between Patient and Physician-Reported Disease Activity in Adult Idiopathic Inflammatory Myopathy

Faculty from the UPMC Division of Rheumatology and Clinical Immunology recently published research that explores the discordance between the physician and patient global disease activity in one third of myositis patients, primarily driven by fatigue, pain, and physical activity.

Didem Saygin, MD, assistant professor of Medicine in the Division of Rheumatology and Clinical Immunology, was a co-author of this study.

Reference: Shiri Keret, Didem Saygin, Siamak Moghadam-Kia, Dianxu Ren, Chester Oddis, Rohit Aggarwal, Discordance between patient- and physician-reported disease activity in adult idiopathic inflammatory myopathy, Rheumatology, 2023; kead316, https://doi.org/10.1093/rheumatology 

Background: Patient-reported global disease activity is a myositis core set measure. Understanding the drivers of patient-reported global disease activity is important for patient assessment, and disagreements between the physician and patient perception of disease activity may negatively impact shared decision making.

Methods: Adults with idiopathic inflammatory myopathy were enrolled in a prospective observational cross-sectional study. The following myositis outcome measures were collected:

• Patient-global.
• Physician-global.
• Extramuscular and muscle disease activity.
• Manual muscle testing.
• HAQ.
• Creatine kinase.
• Fatigue, pain, and physical function.
• Patient-Reported Outcomes Measurement Information System physical function.
• 36-item Short Form.
• Sit to stand, timed up and go, 6-minute walk and actigraph steps/min/day count.

A linear regression model was used to determine the contribution of each measure to patient-global. Discordance was defined as ≥3 points difference between patient-global and physician-global.

Results: Fifty patients with idiopathic inflammatory myopathy were enrolled. Physical function and fatigue measures significantly contributed to patient-global, followed by measures of pain, physical activity, quality of life, and muscle disease. Physician-global was primarily driven by muscle disease activity. Patient-global was discordant with physician-global in 30% of the patient population, of which patient-global was higher than physician-global in 66%. Pain, fatigue, and physical activity contributed more to patient-global than physician-global.

Conclusions: Fatigue, pain, and physical activity are important driving factors of the differences observed in the patient versus the physician assessment of myositis disease activity. It is believed the gap between patient and physician perspectives may help provide better patient-centered care.