Minden S L, Frankel D, Hadden L, Perloffp J, Srinath K P, Hoaglin D C
Department of Psychiatry, Brigham and Women's Hospital, Boston, MA 02115, USA.
Mult Scler. 2006 Feb;12(1):24-38. doi: 10.1191/135248506ms1262oa.
The Sonya Slifka Longitudinal Multiple Sclerosis Study follows a population-based cohort of approximately 2000 people with multiple sclerosis (MS) to study demographic and clinical characteristics, course of illness, utilization and cost of health services, provider characteristics, use of MS specialists and disease modifying agents, and neurologic, economic and psychosocial outcomes. This report describes the study methodology, presents baseline demographic and clinical data, and evaluates the representativeness of the sample. A stratified random sample of persons with established and recently-diagnosed MS selected from the National Multiple Sclerosis Society (NMSS) mailing lists was supplemented with recently-diagnosed patients recruited through systematic nationwide outreach. Baseline data were collected by computer-assisted telephone interviews derived from standardized instruments; data collection continues at six-month intervals. The cohort was comparable to population-based and clinical samples with respect to demographics, course, relapse rate, symptoms, and severity of disability. Almost two-thirds of the cohort needed help with activities of daily living, three-quarters were limited in work or other activities, and half had emotional problems that compromised quality of life. The Slifka Study cohort is broadly representative of the MS population and the database can be used to address questions not answered by natural history studies, clinical databases, or population-based surveys.
索尼娅·斯利夫卡纵向多发性硬化症研究跟踪了一个基于人群的队列，约2000名多发性硬化症（MS）患者，以研究人口统计学和临床特征、疾病进程、卫生服务的利用和成本、医疗服务提供者特征、MS专科医生和疾病修正药物的使用，以及神经学、经济学和社会心理结果。本报告描述了研究方法，呈现了基线人口统计学和临床数据，并评估了样本的代表性。从美国国家多发性硬化症协会（NMSS）邮件列表中选取的已确诊和近期确诊的MS患者分层随机样本，通过全国系统性外展招募的近期确诊患者进行了补充。基线数据通过源自标准化工具的计算机辅助电话访谈收集；数据收集每六个月进行一次。该队列在人口统计学、病程、复发率、症状和残疾严重程度方面与基于人群的样本和临床样本具有可比性。近三分之二的队列成员在日常生活活动中需要帮助，四分之三的人在工作或其他活动中受到限制，一半的人存在影响生活质量的情绪问题。斯利夫卡研究队列广泛代表了MS人群，该数据库可用于解决自然史研究、临床数据库或基于人群的调查未回答的问题。
