Comment suivre un patient atteint du syndrome de Sjögren ?

Elodie Rivière, Rakiba Belkhir, Gaetane Nocturne, Xavier Mariette, Raphaèle Seror
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Abstract

In primary Sjögren's syndrome (pSS), patients may present with heterogeneous symptoms. The triad of characteristic symptoms is frequent and includes dryness, fatigue, and pain. Also, 30 to 40% of patients may develop systemic damage. Thus, pSS patients’ follow-up is individualized and must be adapted to the patient clinical and biological phenotype. The modalities and the frequency of the follow-up depend on the presence or not of systemic complications, or their risk factors. As pSS is a rare disease, it is recommended to organize its management in collaboration with reference centers. pSS management is multidisciplinary and involves different health professionals depending on the initial damage characteristics and the evolution. The aim of the follow-up is to determine the activity and severity of the disease, as well as to detect occurrence of systemic complications. It assesses the efficacy and tolerance of treatments and includes the search for comorbidities. In addition, risk factors of lymphoma must be regularly reassessed. Regular monitoring of ophthalmologic and oral status is required. Recent EULAR guidelines address the management of the triad of dryness, fatigue and pain, and detail the management of systemic involvement. In addition, the “Protocole National de Diagnostic et de Soins” has been recently established and presents a clear strategy for patient management and follow-up. Finally, therapeutic education is a pillar of pSS management, allowing patients to be active in their disease follow-up.

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如何跟踪sjogren综合征患者?
在原发性Sjögren综合征(pSS)中,患者可能呈现异质性症状。三联征是常见的,包括干燥、疲劳和疼痛。此外,30%至40%的患者可能会出现全身性损害。因此,pSS患者的随访是个体化的,必须适应患者的临床和生物学表型。随访的方式和频率取决于是否存在系统性并发症及其危险因素。由于pSS是一种罕见的疾病,建议与参考中心合作组织其管理。pSS的管理是多学科的,涉及不同的卫生专业人员,这取决于最初的损害特征和演变。随访的目的是确定疾病的活动性和严重程度,以及发现全身性并发症的发生。它评估治疗的疗效和耐受性,并包括寻找合并症。此外,淋巴瘤的危险因素必须定期重新评估。需要定期监测眼科和口腔状况。最近的EULAR指南讨论了干燥、疲劳和疼痛三联征的管理,并详细说明了系统性受累的管理。此外,最近建立了“国家诊断和诊断方案”,并为患者管理和随访提供了明确的战略。最后,治疗教育是pSS管理的支柱,允许患者积极参与疾病随访。
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