To move us closer to a world free of MS, the National MS Society takes the leading role in advocacy, research, and treatment for people living with this disease. The Sonya Slifka Longitudinal MS Study will prove invaluable for all three areas of service.
In the same way that the legendary Framingham Heart Study revolutionized the way we look at heart disease, this study tracks a large, diverse sample of people with MS, looking for patterns that will lead to better treatments and possibly even a cure. Initiated with a gift from Society friend, Richard Slifka, and named in honor of his mother, the study follows the same participants for years.
Researchers are interviewing thousands people with MS via telephone every six months, asking about how MS influences their daily lives, how effective their treatments are, and how they utilize health care. The study also collects information on economic status, quality of life, social and family issues, access to MS specialists, and more.
The information we are gathering in this study fuels many aspects of our efforts to improve quality of life for people with MS:
- by helping us to understand which therapies are working best and whether people have access to these treatments;
- by allowing us to share data — once it has been collated and identifying information removed — with the scientific community, thus fostering a partnership with MS researchers worldwide.
- by feeding advocacy groups the information they need to inform policy makers about long-term care, prescription drug coverage, and disability rights in order to reflect the best interests of people living with MS. Read more about advocacy.
Recent Progress:
- Recent analyses have yielded important findings on mental health and quality of life. For example, investigators found that the characteristics of people’s MS had little impact on their mental health, but symptoms and access to health care had a strong impact on mental health.
- Another analysis revealed that quality of life could be enhanced by removing barriers to MS care and general health; by supporting their employment; and by meeting their needs for help with activities of daily living.
- The investigators found that people with MS had significantly lower health-related quality of life than the general population and those with diabetes, congestive heart failure, heart attack, high blood pressure or depression.
- They recently reported that people with MS who see neurologists were more likely than those who see other providers to receive treatment with disease-modifying agents and to see rehabilitation specialists and urologists. The study suggests that the 28% who consult non-neurologists for their MS care — whether because of choice, lack of access, socioeconomic and other factors — may not be receiving the latest advice or widest spectrum of treatments that have been shown to improve outcomes.
- The investigators found that use of disease modifying drugs was also related to a number of other factors. For example, older persons and those with lower incomes were less likely to be using one of the MS drugs. Another interesting finding was that many individuals with primary progressive MS had used one of the MS drugs, even though those drugs are not indicated for that type of MS.
- In another study based on this important database, out-of-pocket health care expenditures were twice those found for the general population. Two-thirds of study participants chose their MS care providers because they were neurologists or MS specialists, creating a demand that almost certainly exceeds current supply.
- Data from the study have been used to inform important advocacy issues. The study provided data for the Society’s Long-Term Care Caucus, suggesting that some 30% of people with MS need home care assistance. Echoing the general population, about 80% of that care is provided by unpaid helpers, usually family members.
- Outside investigators have been granted access to the database to investigate questions about quality of life, rehabilitation, prognostic indicators, the cost-effectiveness of therapies and others.