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 proved invaluable for all three areas of service, and was initiated with a gift from Society friend, Richard Slifka, and named in honor of his mother.
Researchers interviewed (in two phases) 4,500 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 collected 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 fueled many aspects of our efforts to improve quality of life for people with MS:
Analyses of data from the Slifka Study have yielded important findings on mental health and quality of life:
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.
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.
Slifka investigators joined with experts in MS genetics and depression to study whether ApoE genes – which have been associated with depression – played a role in this symptom in a subsample of 295 people recruited from the Slifka study. They found that one version of this gene might be protective against depression.
- They 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.
- In a study of use of disease modifying drugs, the group found that older persons and those with lower incomes were less likely to be using one of the MS drugs. 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.
- 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.
- The investigators followed up by studying 2,478 people enrolled in a second phase of the Sonya Slifka Longitudinal MS Study; this cohort is enriched with people recently diagnosed with MS, African-American and Hispanic individuals, and 18- to 24-year-olds. These groups were somewhat under-represented in the first phase of the study.
Read more about how investigators continue to use data from this important work, in an abstract presented at the annual meeting of the Americas Committee for Treatment and Research in MS.
Read about the outcomes of the entire Promise:2010 initiative in an article from the Summer 2010 issue of Momentum. (.pdf)