Individuals living with lupus commonly experience daily backgrounds of symptoms managed to acceptable tolerance levels to prevent organ damage. Despite management, exacerbation periods (flares) still occur. Varied clinical presentations and unpredictable symptom exacerbation patterns provide management and assessment challenges. Patient perceptions of symptoms vary with perceived impact, lifestyles, available support, and self-management capacity. Therefore, to increase our understanding of lupus’ health impacts and management, it was important to explore lupus flare characteristics from the patient viewpoint. Lupus flares in 101 Australian female patients were retrospectively explored with the use of a novel flare definition. Qualitative methods were used to explore patient-perceived flare symptoms, triggers, and management strategies adopted to alleviate symptom exacerbations. A mean of 29.9 flare days, with 6.8 discrete flares, was experienced. The study confirmed that patients perceive stress, infection, and UV light as flare triggers and identified new potential triggers of temperature and weather changes, work, and chemical exposure from home cleaning. The majority of flares were self-managed with patients making considered management choices without medical input. Barriers to seeking medical support included appointment timings and past negative experiences reflecting incongruence between clinician and patient views of symptom impact, assessment, and ultimately flare occurrence. 1. Introduction Systemic lupus erythematosus (SLE, lupus) is a complex inflammatory illness with varied clinical presentations, providing management and assessment challenges to patients and practitioners [1, 2]. SLE patients live with daily background symptoms and only a few obtain symptom-free periods [3]. A life with lupus usually has an unpredictable pattern of symptom quiescence and periods of exacerbation commonly known as “flares.” This paper explores lupus flares from the lived experience of 101 Australian female SLE patients. Data collection used a structured interview process. A novel flare definition, reflecting a chronic illness experience of symptom stability, punctuated by sustained exacerbation over a specified time period, was incorporated [4]. The paper documents findings of patient-perceived flare symptoms, triggers, and management strategies adopted to alleviate symptom exacerbations. The study is part of the initial development phase of a wider cohort study exploring environmental determinants of SLE flare events, with data collected retrospectively
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