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Describing flares: a mixed methods study comparing patient and clinician perspectives in systemic lupus erythematosus
Martha A Piper1, Alice Tunks2, James A Bourgeois3
1Department of Psychology, University of London, Goldsmiths, UK.
Objectives:
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.
Methods:
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.
Results:
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 with 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.
Conclusion:
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.
