A Comprehensive Analysis of the Direct and Indirect Costs of Multiple Sclerosis

Background: There have been many important studies of the costs of MS, but we lack the comprehensive, detailed, and accurate picture we need to improve the lives of people with MS and their families. This study, funded by the National Multiple Sclerosis Society, was designed to provide these data by

• creating a multidisciplinary team of health economists, health services researchers, clinicians;
• conducting secondary analyses of data sets with representative community and institutional samples of the MS population in the US;
• providing detailed data on use and cost of all domains of health and home care services and health-related purchases;
• providing detailed data on lost employment and education oppportunities for patients and family caregivers and estimates of indirect costs;
• using standardized measures and definitions for comparability with other populations.

Objectives: The study objectives are to describe

• health services and health-related expenditures of people with MS living in the community and in nursing homes, and estimate direct costs to patients/families and society;
• employment and educational losses for patients and families and estimate indirect costs;
• total costs of MS by combining direct and indirect costs;
• types/extent of paid and family caregiving and estimate their costs;
• nursing homes with MS residents (size, services, quality).

Methods: For community residents, we are analyzing data from the 2009 wave of the Sonya Slifka Longitudinal Multiple Sclerosis Study for 2,361 individuals with MS who provided, during computer assisted telephone interviews, the information they had recorded in daily logbooks over18-25 months on health and home care service use and out of pocket spending (overnight stays and visits to ERs, day hospitals, doctors/nurses, mental health/rehabilitation specialists, complementary/alternative therapists); work loss days for themselves and their families; and health-related purchases (disease modifying therapies/prescription medication, home/vehicle modifications, equipment/supplies, transportation).  For nursing home residents, we are anlyzing data from the Minimum Data Set and Medicare and Medicaid claims for service use in and outside the facility, and data from the Online Survey, Certification, and Reporting to characterize facilities with MS residents.  We will use the Medical Expenditure Panel Survey to compare these data with the general population and the Partners Research Patient Data Registry and pricing databases to estimate costs of family homecare and direct costs of services and purchases. 

Results: The study team is actively analyzing and producing the data described above. The poster will describe the samples and present the latest findings in the domains of service utilization and health-related purchases for both community and nursing home samples.

Conclusions: These data will advance understanding of service use, unmet needs, and financial burden.