Background/Purpose: Disease activity assessment is key in the management of patients with idiopathic inflammatory myopathies (IIM). However, patients’ perception of disease may differ from clinicians. We tried to understand what factors lead to discrepancy between patients’ and physicians’ perception of disease activity in IIMs from the COVID-19 Vaccination in Autoimmune Diseases (COVAD) study.

Methods: The COVAD-1 study collected global cross-sectional data from adults with autoimmune diseases and healthy controls by a team of 106 experts from 94 countries from April-December 2021, on demographics; disease characteristics, treatment and glucocorticoid (GC) dose; and validated patient reported outcomes (PROs), including PROMIS SF10 physical function, VAS-pain and VAS-fatigue. Patient-perceived active disease was self-reported. Physician-reported active disease was defined as presence of joint swelling, active rash or worsened muscle weakness and/or GC dose ≥10mg prednisolone equivalents. Discordant and concordant pairs of patient-physician reported disease activity were compared, and predictors of discordance were analysed using multivariate regression models.

Results: Among 16328 respondents, 1217 patients with IIM were included (median age 59 years (IQR 45-73), 70% females and 81.6% Caucasians, details in Table 1). Dermatomyositis (DM; 30.9%) was the most common subtype. Moderate concordance was seen between patient and physician disease activity. Discordance was identified in 38.8% (n=472) responses. Poorest concordance was observed in inclusion body myositis (IBM), overlap myositis (OM) and necrotising autoimmune myopathy (NAM) subgroups. Among patients with DM and OM, those with higher PROMIS physical function scores (i.e. better physical function) were more likely to be concordant (DM: OR=1.03, 95% CI: 1.01-1.05, p=0.012; OM: OR=1.04, 95% CI: 1.01-1.06, p=0.012) while older patients with DM were prone to discordance (OR =0.98, 95% CI: 0.97-0.99, p=0.03) PROMIS scores varied significantly among the four groups of perceived disease activity (active or inactive by patient and/or physician) and disease subgroups except IBM (Figure 1). Pain and Fatigue VAS scores also varied significantly among the four groups. Multivariable analysis, controlling for age, gender, fatigue and pain, showed respondents with higher PROMIS physical function scores were more likely to belong to one of the active disease perception groups, compared to concordant inactive groups, for all disease subgroups except IBM (Table 2). Addition of PROMIS increased area under the curve by 8-10% in model fitting. Simple cut-off scores based on PROMIS scores could be developed to distinguish active from inactive disease.

Conclusion: Our study provides invaluable insights into the factors determining patents’ perception of self-reported disease activity, and the disease groups where these measures may be less reliable for remote monitoring and virtual trials. Patient-reported assessment might be discordant in IBM while likely to be fairly concordant in DM and younger individuals irrespective of pain and fatigue.

« Back to ACR Convergence 2023

ACR Meeting Abstracts - https://acrabstracts.org/abstract/discordance-between-patient-and-physician-perception-of-disease-activity-among-patients-with-idiopathic-inflammatory-myopathies-results-from-the-covad-study/