Martha A Piper, Alice Tunks, James A Bourgeois, Lucy Calderwood, David D'Cruz, Alessandra Bortoluzzi, Arjoon Arunasalam, Shaista Tayabali, Sydnae Taylor, Pratyasha Saha, Max Yates, Paige Hamilton-Conaty, Arvind Kaul, Melanie Sloan
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.
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 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.
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.