Service de Rhumatologie, Hôpitaux universitaires de Strasbourg, Strasbourg, France.
Centre National de Références des Maladies Auto-immunes Rares (CRMR RESO), Strasbourg, France.
Lupus Sci Med. 2022 May;9(1). doi: 10.1136/lupus-2022-000700.
Among the most significant challenges in SLE are the excessive diagnosis delay and the lack of coordinated care. The aim of the study was to investigate patient pathways in SLE in order to improve clinical and organisational challenges in the management of those with suspected and confirmed SLE.
We conducted a cross-sectional study of patients with SLE, healthcare providers and other representative stakeholders. Focus groups were conducted, and based on the collected data the most impactful disruption points in SLE patient pathways were identified. A novel framework to improve individual patient pathways in SLE was developed, discussed and validated during a consensus meeting with representative stakeholders.
Six thematic clusters regarding disruption in optimal patient pathways in SLE were identified: appropriate and timely referral strategy for SLE diagnosis; the need for a dedicated consultation during which the diagnosis of SLE would be announced, and following which clarifications and psychological support offered; individualised patient pathways with coordinated care based on organ involvement, disease severity and patient preference; improved therapeutic patient education; prevention of complications such as infections, osteoporosis and cancer; and additional patient support. During the consensus meeting, the broader panel of stakeholders achieved consensus on these attributes and a framework for optimising SLE patient pathways was developed.
We have identified significant disruption points and developed a novel conceptual framework to improve individual patient pathways in SLE. These data may be of valuable interest to patients with SLE, their physicians, health organisations as well as policy makers.
在系统性红斑狼疮（SLE）中，最显著的挑战之一是诊断延误和缺乏协调护理。本研究旨在调查 SLE 患者的就诊路径，以改善疑似和确诊 SLE 患者管理中的临床和组织挑战。
我们对 SLE 患者、医疗保健提供者和其他代表性利益相关者进行了一项横断面研究。进行了焦点小组讨论，并根据收集的数据确定了 SLE 患者就诊路径中最具影响力的中断点。在与代表性利益相关者举行的共识会议上，开发、讨论和验证了一种改善 SLE 患者个体就诊路径的新框架。
确定了 SLE 患者就诊路径中存在的 6 个主题集群，这些集群导致了就诊路径中断：SLE 诊断的适当和及时转诊策略；需要进行专门的咨询，在咨询中宣布 SLE 诊断，并在其后提供澄清和心理支持；基于器官受累、疾病严重程度和患者偏好的个体化患者就诊路径，以及协调护理；改善治疗患者教育；预防感染、骨质疏松和癌症等并发症；以及提供额外的患者支持。在共识会议期间，更广泛的利益相关者小组就这些属性达成了共识，并制定了优化 SLE 患者就诊路径的框架。
我们已经确定了重大的中断点，并开发了一种新的概念框架，以改善 SLE 患者的个体就诊路径。这些数据可能对 SLE 患者、他们的医生、卫生组织以及政策制定者具有重要的参考价值。
