Abstract Background/Aims Symptoms of systemic autoimmune rheumatic diseases (SARDs) often follow a relapsing-remitting course, with periods of increased disease activity often referred to as flares. The word “flare” is poorly defined, with classifications largely based on clinical test results and clinician assessment, and a minority incorporating patient-reported measures. Studies suggest that patients and clinicians describe flares differently: patients emphasise their symptoms, while clinicians prioritise their own assessments of disease activity, typically focusing on changes in clinical tests or treatment needs. This study aimed to compare definitions of flares between SARD patients and clinicians. Methods Interviews with SARD patients and clinicians explored flare definitions, symptoms, recognition and management. To supplement these data with a quantitative example, an international co-produced survey conducted April-July 2025 asked systemic lupus erythematosus (SLE) patients and clinicians to rate statements about flares on a Likert scale from “Never” to “Always”. Qualitative data were analysed thematically; quantitative data were analysed using t-tests and ANOVA. Results In-depth interviews were conducted with 31 SARD patients and 12 clinicians. SLE patients (N = 443) and clinicians (N = 258, 66% of whom were rheumatologists) completed the survey. SLE patient and clinician mean ratings were significantly different for 12 of the 18 statements. Three main themes were identified: 1. Characteristics of flares: Patients and clinicians described flares as a worsening of symptoms, but there was variation in the onset, severity, duration and type of symptoms discussed. Most notable were differences in responses about flare onset; 39% of patients compared to 14% of clinicians said flares “often” or “always” started suddenly (in a matter of minutes or hours) (p 0.001). 2. Recognition of flares: Patients reported being able to identify prodromal symptoms which signified impending flares and rated “patient can tell” significantly higher than clinicians (p 0.001). In interviews, clinicians emphasised the importance of empowering patients to become experts on their own flares and stressed the limitations of clinical tests for flare recognition. 3. Medical intervention, self-management or both: Clinicians were significantly more likely than patients to think flares “required an increase in prescribed medication” (p = 0.005) or “required new medication” (p 0.001). Both groups discussed barriers to medical support, which meant patients sometimes resorted to self-medicating and non-medical flare management methods. Conclusion We highlight differences in how SARD patients and clinicians describe and define disease flares, notably related to onset, recognition and medical intervention. These differences have implications for flare detection, management and the design of clinical trials involving flares. Our results challenge the current dominance of objective tests for assessing flare status and highlight the importance of incorporating patient perspectives. Interventions are required to identify flare triggers, reduce flare occurrence and improve flare management, with the aim of improving long-term outcomes and quality of life in SARD patients. Disclosure M. Piper: None. A. Tunks: None. D. D’Cruz: None. J.A. Bourgeois: None. L. Calderwood: None. G. Leschziner: None. A. Bortoluzzi: None. A. Arunasalam: None. A. Kaul: None. E. Dalby: None. P. Saha: None. M. Yates: None. P. Hamilton-Conaty: None. M.A. Sloan: None.
Piper et al. (Wed,) studied this question.
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