This Article Full Text (PDF) References Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Minden, S L Articles by Hoaglin, D C Search for Related Content PubMed PubMed Citation Articles by Minden, S L Articles by Hoaglin, D C Social Bookmarking                         What's this?

The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics

Department of Psychiatry, Brigham and Women’s Hospital, Boston, MA 02115, USA, sarah_minden{at}abtassoc.com

D Frankel

Division of Health Policy and Clinical Research, Abt Associates Inc., Cambridge, MA 02138, USA

L Hadden

Division of Health Policy and Clinical Research, Abt Associates Inc., Cambridge, MA 02138, USA

J Perloff

Heller School, Brandeis University, Waltham, MA 02154, USA

K P Srinath

Division of Health Policy and Clinical Research, Abt Associates Inc., Cambridge, MA 02138, USA

D C Hoaglin

Survey Data Collection and Methods Group, Abt Associates Inc., Cambridge, MA 02138, USA

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.

Key Words: disability • epidemiology • multiple sclerosis • natural history • patient database • socioeconomics

Multiple Sclerosis, Vol. 12, No. 1, 24-38 (2006)
DOI: 10.1191/135248506ms1262oa


CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter    What's this?

This article has been cited by other articles:

				W. S MacAllister, C. Christodoulou, R. Troxell, M. Milazzo, P. Block, T. E Preston, H. A Bender, A. Belman, and L. B Krupp Fatigue and quality of life in pediatric multiple sclerosis Multiple Sclerosis, December 1, 2009; 15(12): 1502 - 1508. [Abstract] [PDF]

				J. Wesson, J. Cooper, L. Jehle, S. Lockhart, K. Draney, and J. Barber The functional index for living with multiple sclerosis: development and validation of a new quality of life questionnaire Multiple Sclerosis, October 1, 2009; 15(10): 1239 - 1249. [Abstract] [PDF]

				L. Julian, L Vella, D Frankel, S. Minden, J. Oksenberg, and D. Mohr ApoE alleles, depression and positive affect in multiple sclerosis Multiple Sclerosis, March 1, 2009; 15(3): 311 - 315. [Abstract] [PDF]

				E Patrick, C Christodoulou, L. Krupp, and on behalf of the New York State MS Consortium Longitudinal correlates of fatigue in multiple sclerosis Multiple Sclerosis, February 1, 2009; 15(2): 258 - 261. [Abstract] [PDF]

				A. Bamer, K. Johnson, D Amtmann, and G. Kraft Prevalence of sleep problems in individuals with multiple sclerosis Multiple Sclerosis, September 1, 2008; 14(8): 1127 - 1130. [Abstract] [PDF]

				M Koch, M Uyttenboogaart, A van Harten, M Heerings, and J De Keyser Fatigue, depression and progression in multiple sclerosis Multiple Sclerosis, July 1, 2008; 14(6): 815 - 822. [Abstract] [PDF]

				S Minden, D Hoaglin, S Jureidini, L Hadden, D Frankel, Y Komatsuzaki, and J Outley Disease-modifying agents in the Sonya Slifka Longitudinal Multiple Sclerosis Study Multiple Sclerosis, June 1, 2008; 14(5): 640 - 655. [Abstract] [PDF]

				S. L. Minden, D. C. Hoaglin, L. Hadden, D. Frankel, T. Robbins, and J. Perloff Access to and utilization of neurologists by people with multiple sclerosis Neurology, March 25, 2008; 70(13_Part_2): 1141 - 1149. [Abstract] [Full Text] [PDF]

				S.L. Minden, D. Frankel, L. Hadden, and D.C. Hoaglin Access to health care for people with multiple sclerosis Multiple Sclerosis, May 1, 2007; 13(4): 547 - 558. [Abstract] [PDF]

				R. J. Buchanan, R. Schiffer, S. Wang, A. Stuifbergen, B. Chakravorty, L. Zhu, M. Suk Kim, and W. James Satisfaction With Mental Health Care Among People With Multiple Sclerosis in Urban and Rural Areas Psychiatr Serv, August 1, 2006; 57(8): 1206 - 1209. [Abstract] [Full Text] [PDF]

				L. Krupp Editorial Multiple Sclerosis, August 1, 2006; 12(4): 367 - 368. [PDF]