Debouverie M, Laforest L, Van Ganse E, Guillemin F
Department of Neurology, Central Hospital, Nancy, France.
Mult Scler. 2009 Feb;15(2):251-7. doi: 10.1177/1352458508097919.
The currently published works regarding the multiple sclerosis (MS) natural history report data were collected most often on population of patients recruited in MS centers. The aim was to compare the natural history of a population of patients followed in a MS centre (MSC) with patients followed outside a MS centre (NMSC).
Cases were identified through the LORSEP cohort, a network of neurologists (private ambulatory practice, hospitals, and MS centers) in France.
A total of 3602 patients had been analyzed: 1036 MSC patients and 2566 NMSC patients. No difference was observed regarding gender and initial symptoms. Conversely, MSC patients were younger at MS onset and were more likely to have a primary progressive initial form. Median times (years) to the EDSS scores of 3, 4, and 6 were 5.8 (5.0-6.8), 8.4 (7.9-9.0), 16.0 (14.8-18.1) in the MSC group, respectively, whereas corresponding times were 8.4 (7.9-9.0), 12.3 (11.4-13.4), 19.1 (18.0-20.2) in the NMSC group. These differences according to the type of MS supervision were statistically significant for EDSS3 (P < 0.0001), EDSS4 (P < 0.0001), and EDSS6 (P = 0.01), respectively. These findings were confirmed in Cox multivariate models.
The patients followed in a MS centre had earlier disability than patients managed otherwise. Analyses exclusively conducted in patients with MS supervised in specialized centers may falsely misestimate the times needed to reach major disability landmarks. Before using registries to study the natural history of MS, efforts should be performed to verify in how far data are exhaustive and to understand the local health care system.
目前已发表的关于多发性硬化症（MS）自然史的研究报告数据大多收集自MS中心招募的患者群体。本研究旨在比较在MS中心（MSC）接受随访的患者群体与在MS中心以外（NMSC）接受随访的患者群体的自然史。
通过LORSEP队列识别病例，LORSEP队列是法国的一个由神经科医生组成的网络（私人门诊、医院和MS中心）。
共分析了3602例患者：1036例MSC患者和2566例NMSC患者。在性别和初始症状方面未观察到差异。相反，MSC患者在MS发病时更年轻，且更有可能具有原发进展型初始形式。在MSC组中，EDSS评分达到3、4和6的中位时间（年）分别为5.8（5.0 - 6.8）、8.4（7.9 - 9.0）、16.0（14.8 - 18.1），而在NMSC组中相应时间分别为8.4（7.9 - 9.0）、12.3（11.4 - 13.4）、19.1（18.0 - 20.2）。根据MS监测类型的这些差异，对于EDSS3（P < 0.0001）、EDSS4（P < 0.0001）和EDSS6（P = 0.01）分别具有统计学意义。这些发现在Cox多变量模型中得到证实。
在MS中心接受随访的患者比其他方式管理的患者更早出现残疾。仅在专业中心接受MS监测的患者中进行的分析可能会错误地高估达到主要残疾里程碑所需的时间。在使用登记处研究MS的自然史之前，应努力核实数据的详尽程度，并了解当地的医疗保健系统。
