Rheumatology, The University of Manchester, Manchester, UK.
Research, Lupus Foundation of America, Washington, District of Columbia, USA
Lupus Sci Med. 2023 Jan;10(1). doi: 10.1136/lupus-2022-000856. Epub 2023 Jan 11.
Lupus is a complex disease that is often difficult to diagnose. Risks of diagnostic delays include non-specific signs and symptoms that mimic other diseases and a lack of diagnostic criteria and referral pathways for non-specialists. To address these issues, we convened a series of virtual meetings with members of our Addressing Lupus Pillars for Health Advancement clinical care team. Meeting participants included lupus physicians, treatment developers from biotechnology, patient advocacy group representatives from the Lupus Foundation of America and advocacy/government consultants. Causes and consequences of ambiguity in diagnosis and diagnostic delays were evaluated through historical, experiential and evidence-based accounts (survey data, literature reviews and patient testimonials). Discussions highlighted the need for a clearer understanding of the definition of lupus, the natural history of the disease and the need for advancements in biotechnology to support an accurate and timely diagnosis with the potential development of a lupus spectrum.
狼疮是一种复杂的疾病，通常难以诊断。诊断延迟的风险包括非特异性的症状和体征，这些症状和体征类似于其他疾病，以及缺乏非专家的诊断标准和转诊途径。为了解决这些问题，我们召集了一系列虚拟会议，与我们的“Addressing Lupus Pillars for Health Advancement”临床护理团队的成员进行了讨论。会议参与者包括狼疮医生、生物技术治疗开发商、美国狼疮基金会的患者权益团体代表以及倡导/政府顾问。通过历史、经验和基于证据的描述（调查数据、文献综述和患者证言），评估了诊断和诊断延迟的不明确性的原因和后果。讨论强调需要更清楚地了解狼疮的定义、疾病的自然史以及生物技术进步的必要性，以支持准确和及时的诊断，并有可能发展出狼疮谱。
