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.

People with multiple sclerosis who see neurologists are more likely than people who see other providers to receive treatment with disease-modifying agents and see rehabilitation specialists and urologists. While some people may choose other providers, economic, insurance, racial, and geographic factors appear to limit access to neurologists.

This study compares the demographic, clinical, and health care characteristics of 2,156 persons over and under age 65 who are participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study and examines the effects of current age, age at diagnosis, course, and duration of illness on disability-related outcomes. Compared to younger MS patients, significantly higher percentages of older patients lived alone, had lower incomes, and were severely disabled; 85% needed help with activities of daily living and 40% received home care services. Almost all older patients had health insurance, 75% had prescription drug coverage, and few reported difficulty accessing general medical and specialized MS care; perceptions of health status and quality of life were relatively positive. Duration and course of illness were the major predictors of disability, although older current age and younger age at diagnosis were also associated. The relationship among age-and disease-related variables is complex and they likely exert independent effects on disability-related outcomes. Planning is needed by caregivers and policy makers to ensure that the specialized needs of elderly persons with MS are adequately met.

The Sonya Slifka Longitudinal Multiple Sclerosis (MS) Study follows a population-based cohort of approximately 2000 people with MS to study demographic and clinical characteristics, use and cost of health services, provider and treatment characteristics, neurological, economic, and psychosocial outcomes. We examined key indicators of access to health care and found that the majority of participants had health insurance, a usual source of care, and access to specialty care. Nevertheless, 3.8% did not have health insurance which, with application of sampling weights, corresponds to approximately 7000 people with MS in the US population. Even with insurance, population-based estimates indicated that substantial numbers of people with MS have plans that pay nothing toward prescription medication, limit their access to specialists, and restrict their choice of hospitals and providers. Some 9% of the sample, corresponding to 15,800 people with MS, did not have a usual source of MS care; 11.8% or 17,300 people did not have a usual source of general health care; and 31% or 57,400 people did not see the specialists that they or their physicians wanted them to see. Further, 10.5% or 19,400 people reported difficulty obtaining prescription medication, 4.1% or 7600 people encountered obstacles accessing medical care, and 2.4% or 4500 people could not obtain the mental health services they needed. Finally, out-of-pocket health care expenditures were twice those found for the general population. Two-thirds of study participants (representing almost 70,000 people) chose their MS care providers because they were neurologists or MS specialists, creating a demand that almost certainly exceeds current supply.

Dissemination of expert opinion about, and management strategies for, use of DMAs to non-neurologic professionals and patients and their families might help more people who are appropriate candidates for DMA therapy to start and continue treatment.