Skip to contents

Sarah Lynne Minden, MD
Psychiatrist, Brigham and Women's Hospital
Assistant Professor of Psychiatry, Harvard Medical School

Brigham and Women's Hospital
Department of Psychiatry
75 Francis Street
Boston, MA 02115

Edit Profile

Research Narrative:

Our research uses data from The Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka) which was established in 2000 to study demographic and clinical characteristics, course of illness, utilization and cost of health services, and neurologic, economic and psychosocial outcomes among a generally representative sample of about 4,500 people with multiple sclerosis (MS) from across the U.S. The sample contains people with all durations and courses of illness, all degrees of severity, and all types of disabilities; people from all regions of the U.S. and both urban and rural settings; people who receive their MS care in primary care, tertiary care, and MS specialty settings; and people who receive no MS care at all. We collected data by computer-assisted telephone interviews (CATI) every 6 months and patients kept daily logs of their health service utilization, health-related purchases, and out of pocket spending. Data collection ended in 2010 and we are now in the process of analyzing the data and distributing data to other investigators.

The Slifka database can be used for cross-sectional and longitudinal analyses of many kinds of data including, but not limited to demographic and clinical characteristics of individuals with MS and their families, prognostic indicators, therapeutic interventions and outcomes, health care utilization and cost, pharmacoeconomics, access to and quality of care, and quality of life. The 2009 and 2010 waves provide detailed, event-based data on health service utilization (overnight stays and visits to emergency rooms, day hospitals, doctors/nurses, and rehabilitation, mental health, and complementary and alternative therapists; tests, x-rays, shots, treatments, procedures; professional and non-professional paid home health care; 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 out of pocket costs. We also have data from patients’ physicians on their own demographic, educational, and practice characteristics, and, from a sub-sample of 150 recently diagnosed individuals, buffy coat and plasma for genetic and immunological studies, and personal and family medical histories, and ancestry.

We are using the Slifka data in three studies funded by the National Multiple Sclerosis Society to determine the direct and indirect costs of MS, out of pocket costs for patients and families, and the financial and other impacts of informal (unpaid) care for individuals with MS. To compare individuals with MS living in the community with those who live in nursing homes, and to describe  nursing homes with MS residents, we are using the Centers for Medicare and Medicaid Services’ Data Set on nursing home residents, Medicare and Medicaid claims files, and the Online Survey, Certification and Reporting. We are also conducting studies to develop a screening tool to identify individuals with MS who are at risk for or victims of abuse by caregivers and to evaluate an innovative day program at the Boston Home  in Dorchester, MA, an award-winning nursing home with 100 residents with MS.