A Unique Tool for Studying Multiple Sclerosis: the Sonya Slifka Database

Background: The Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka)was established by the National Multiple Sclerosis Society (NMSS) in 2000 to study demographic and illness characteristics, use and cost of health services, access to care, quality of life, and treatment, economic and psychosocial outcomes among a generally representative sample of about 4,500 individuals with multiple sclerosis (MS) from across the US. These individuals have all durations and courses of illness, degrees of severity, and types of disabilities; live in urban and rural settings in all regions of the country; receive their MS care in primary, tertiary, and MS specialty settings or receive no MS care at all. By design, we oversampled individuals who were newly-diagnosed, African-American, Hispanic, and/or 18-24 years old for subgroup analyses. Participants kept daily logs of their health service use and health-related spending. We collected these and other data by computer-assisted telephone interviews every 6 months. The database can be used for cross-sectional and longitudinal analyses.

The 2009 and 2010 waves provide detailed, event-based data on health service use (overnight stays and visits to emergency rooms, day hospitals, doctors/nurses, and rehabilitation, mental health, and complementary and alternative therapists; tests, treatments, procedures; professional, non-professional, and unpaid/informal home care); health-related purchases (disease modifying agents, prescription and over-the counter medication and products; home and vehicle modifications; equipment and supplies; transportation), and other out of pocket costs such as insurance copayments. We also have data from patients’ physicians on their own demographic, educational, and practice characteristics.

The NMSS arranged with the Brigham and Women’s hospital to make available to qualified investigators the Slifka data and the services of the Slifka study team of physicians, economists, statisticians, policy analysts, and SAS programmers. The team is studying the direct and indirect costs of MS, impact of out of pocket costs, and financial implications of informal caregiving. Others are focused on employment, pregnancy, the impact of children in the home, and mental health treatment. 

Objectives: At the meeting, we will describe the study sample, discuss the data that are available, and answer questions about possible uses of the database by investigators interested in health services, clinical, outcomes, and policy research.

Conclusions: The Sonya Slifka database is a unique tool for researchers to conduct cross-sectional and longitudinal analyses of health services, clinical, and outcomes data on a population-based, generally representative sample of individuals with MS. It can also be used to obtain national and local data to support advocacy, programming, and policymaking efforts.