To Örebro University

Despite advancements in the management of systemic lupus erythematosus (SLE), patients experience poor health-related quality of life (hrQoL) and premature death due to disease severity and treatment side effects. Achieving remission offers substantial benefits, including improved hrQoL and reduced mortality, yet the complexity of SLE, with its diverse underlying immune mechanisms and clinical manifestations, hampers progress. Involvement of the central nervous system with symptoms like fatigue, pain and brain fog often goes unaddressed due to limited evidence-based guidance and measurement tools. This neglect reflects gaps in training, discomfort in addressing untreatable symptoms and an overemphasis on evidence-based medicine, compromising holistic care. Recognising patient-reported outcomes has shifted SLE care towards a more patient-centred model, addressing hrQoL and aligning treatment goals. Embracing this approach and prioritising symptom management, even when a definitive cure is lacking, ensures compassionate, comprehensive care that improves adherence, satisfaction and the overall lived experience of patients with SLE.