Describing flares: A mixed methods study comparing patient and clinician perspectives in systemic lupus erythematosus and other rheumatic diseases.

Abstract

Systemic autoimmune rheumatic diseases (SARDs) relapse and remit, with periods of increased disease activity called "flares". This study compared patient and clinician perspectives of flares. Mixed-methods approach combining an international co-produced survey and in-depth interviews. SLE patients and clinicians rated statements about flares on Likert scales from "never" to "always". Quantitative data were analysed using t-tests and ANOVA. Patient and clinician interviews were analysed thematically. Quantitative and qualitative analyses were triangulated by exploring converging, diverging and explanatory findings across the datasets. Qualitative (N = 31 SARD patients, N = 12 clinicians) and quantitative (N = 443 SLE patients, N = 258 clinicians) results indicated differential patient and clinician perspectives. The main themes identified were: characteristics/consequences of flares; recognition of flares; and treatment for flares (medical and/or self-management). Patients and clinicians had significantly different mean ratings for 12/17 flare statements. Notably, regarding flare onset, 39% of patients compared to 14% of clinicians said flares "often" or "always" started within minutes or hours (p < 0·001). We found differences in identification of flares, with patients rating "patient can tell" significantly higher than clinicians (p<·001), including awareness of prodromal symptoms. Clinicians were significantly more likely to think flares required increased (p = 0·005) or new (p<·001) medication. There was consensus about the impact of flares on wellbeing. We highlight differences in how SARD patients and clinicians describe flares, notably related to onset, recognition and intervention. These differences challenge the prevailing reliance on clinician-derived disease activity measures and biomarkers for flare assessment, highlighting the need for integration of patient and clinician perspectives.