The first publication from the Sonya Slifka Longitudinal Multiple Sclerosis Study points to challenges facing persons who are aging with MS. This first pass, which explores baseline responses and does not look at changes over time, only skims the surface of the wealth of information beginning to accumulate from this effort. That wealth is now being made available to qualified investigators seeking clues to the impact of MS over time.
One of the National MS Society’s targeted research initiatives begun in 1999, the Sonya Slifka Longitudinal MS Study is following a sample of the MS population in the U.S. over a long period of time. The seven-year, $3.3 million grant was supported in part by a gift from the Society’s Past Chair Richard Slifka, and named in honor of his mother.
Sarah Minden, MD, and colleagues (Abt Associates, Inc., Cambridge, MA) collect information from participants every six months via phone interviews. Questions cover a broad range of topics, including demographics and clinical characteristics, health care utilization, social and family issues, and more.
The recently published study (NeuroRehabilitation 2004;19(1):55-67) compared the 2,156 persons participating in the Sonya Slifka Longitudinal MS Study, splitting them for the purposes of this study into those older than, and younger than, 65. Findings included:
- Older individuals tended to be more severely disabled and were more likely to need help with daily activities. Although 85% reported having such help, only 40% received professional home care services. The investigators hope to explore this further in terms of the quality of care and unmet needs.
- Almost all older individuals had health insurance and 75% had prescription drug coverage.
- Older persons with MS were more likely to have progressive MS but less likely to have a regular source of MS care or to be using a disease-modifying drug.
- On average, income was lower among the older group, and older individuals with MS were more likely than those under 65 to live alone.
- Despite their level of disability and care needs, many older individuals viewed their health status and quality of life positively.
Over time, the Sonya Slifka Longitudinal MS Study will permit scientists to further explore other questions about MS and aging, as well as questions related to access to health care, medication use, response to disease-modifying agents, family issues and many other questions about the impact of MS. Because a wide variety of information is being tracked, the Sonya Slifka Longitudinal MS Study will also permit scientists to pose new questions as they are identified, and allow investigators to tease out factors that may influence disease course.
Qualified investigators can apply to the Society to obtain access to the data. Get further information about applying to gain access.