Parodis Ioannis, Wincup Chris, Touma Zahi, Andersen Jeanette, Strand Vibeke, Sjöwall Christopher
Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, and Center for Molecular Medicine (CMM), Stockholm, Sweden.
Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
RMD Open. 2025 Mar 7;11(1):e005400. doi: 10.1136/rmdopen-2024-005400.
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.
尽管系统性红斑狼疮(SLE)的管理取得了进展,但由于疾病严重程度和治疗副作用,患者的健康相关生活质量(hrQoL)较差且过早死亡。实现缓解可带来诸多益处,包括改善hrQoL和降低死亡率,然而SLE的复杂性,及其多样的潜在免疫机制和临床表现,阻碍了进展。由于基于证据的指导和测量工具有限,中枢神经系统受累出现的疲劳、疼痛和脑雾等症状往往未得到解决。这种忽视反映了培训方面的差距、处理无法治疗症状时的不适感以及对循证医学的过度强调,损害了整体护理。认识到患者报告的结果已将SLE护理转向更以患者为中心的模式,解决hrQoL问题并调整治疗目标。采用这种方法并优先处理症状管理,即使缺乏明确的治愈方法,也能确保提供富有同情心的全面护理,从而提高依从性、满意度以及SLE患者的整体生活体验。