The Lived Experience of Lupus Flares: Features, Triggers, and Management in an Australian Female Cohort

Abstract

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.