A profile of multiple sclerosis: The New York State Multiple Sclerosis Consortium

• Published in: Multiple sclerosis Vol. 5; no. 5; pp. 369 - 376
• Main Authors: Jacobs, L D, Wende, K E, Brownscheidle, C M, Apatoff, B, Coyle, P K, Goodman, A, Gottesman, M H, Granger, C V, Greenberg, S J, Herbert, J, Krupp, L, Lava, N S, Mihai, C, Miller, A E, Perel, A, Smith, C R, Snyder, D H
• Format: Journal Article
• Language: English
• Published: Thousand Oaks, CA SAGE Publications 01-10-1999; Arnold
• Subjects: Adult; Age Distribution; Association; Biological and medical sciences; Demography; Disabled Persons - statistics & numerical data; Employment; Female; Humans; Insurance, Health; Male; Medical sciences; Middle Aged; Multiple Sclerosis - classification; Multiple Sclerosis - complications; Multiple Sclerosis - epidemiology; Multiple Sclerosis - physiopathology; Multiple sclerosis and variants. Guillain barré syndrome and other inflammatory polyneuropathies. Leukoencephalitis; Neurology; New York; Registries; Sex Distribution; Time Factors; New York; United States; North America; America; demyelinating disease; multiple sclerosis; neurodegenerative disease; Human; Nervous system diseases; Multiple sclerosis; Demography; Databank; Cohort study; Central nervous system disease; Clinical form; Epidemiology; Social impact; Public health; Inflammatory disease
• ISSN: 1352-4585; 1477-0970
• DOI: 10.1177/135245859900500511

We have obtained a current profile of multiple sclerosis (MS) in New York State through a centralized patient registry and standardized data collection instrument associated with the New York State Multiple Sclerosis Consortium of 12 MS centers located throughout the state. Data from the first 3019 patients with clinically definite MS revealed a clear relationship between MS disease type, duration of disease, and severity of physical disability. Patients with relapsing disease had disease durations approximately half as long as those with progressive forms of the disease (means approximately 6 years versus 11 years). The majority of patients with relapsing disease had Expanded Disability Status Scale (EDSS) scores of 4.0 or less (self-sustained, fully ambulatory), whereas the majority of patients with progressive disease types had EDSS scores of 6.0 or greater (at least unilateral assist for walking). These findings emphasize the importance of early intervention in patients with relapsing disease to slow or prevent the accumulation of physical disability associated with progressive types of disease. Progressive disease was associated with lack of full-time employment and being disabled before the age of 60 years. Patients with relapsing disease were more likely to be employed and have private forms of insurance, whereas patients with progressive types of disease were more likely to have government-supported insurance to cover medical expenses.