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

Abstract

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.

High-priority employment concerns of Hispanics/Latinos with multiple sclerosis in the United States

“…Eight of the participating NMSS chapters were asked to identify stratified random sub-samples of 800 clients (stratified by racial/ethnic backgrounds depending upon the representation of Hispanics/Latinos and African Americans in their client registries), and one chapter was asked to draw a stratified random subsample of 1,600 clients -100 African Americans, 800 Hispanics/Latinos, and 700 clients from other racial and ethnic backgrounds. The goal of this sampling procedure was to ensure that at least five percent of the overall respondent sample was Hispanic/Latino and that at least five percent was African American; these proportions are consistent with commonly held estimates of population parameters for people with MS (Minden et al, 2006). Within the stratified random target sample of 8,000 people with MS, 1,123 (14%) were Hispanic/Latino and 603 (7.5%) were African American.…”

Ambulatory Assessment in Neuropsychology

“…High prevalence of fatigue in MS (60 -85%) has also been reported in other large-scale (n > 500) studies (Lerdal, Celius, & Moum, 2003;Minden et al, 2006). However, the aetiology of MS-related fatigue is uncertain, and primary disease-related mechanisms as well as secondary mechanisms have been proposed (for reviews, see Induruwa, Constantinescu, & Gran, 2012;Kos, Kerckhofs, Nagels, D'hooghe, & Ilsbroukx, 2008;Krupp, et al, 2010).…”

The employment concerns of Americans with multiple sclerosis: Perspectives from a national sample

“…Eight of the participating NMSS chapters were asked to identify stratified random sub-samples of 800 clients (stratified by racial/ethnic backgrounds depending upon the representation of Hispanic/Latinos and African Americans in their client registries), and one chapter was asked to draw a stratified random sub-sample of 1,600 clients -100 African Americans, 800 Hispanic/Latinos, and 700 clients from other racial and ethnic backgrounds. The goal of this sampling procedure was to ensure that at least five percent of the overall respondent sample was Hispanic/Latino and that at least five percent was African American; these proportions are consistent with commonly held estimates of population parameters for people with MS [43].…”