947,000 people in the US had Multiple Sclerosis 2008-2010

Created November 2017

Nearly 1 Million Americans Have Multiple Sclerosis, NMSS Prevalence Study Finds

  • “An estimated 947,000 people in the U.S. have multiple sclerosis (MS) — more than double the long-accepted figure of 400,000 — according to a newly completed study organized and funded by the National Multiple Sclerosis Society (NMSS).”

Poster was presented at international MS conference in France

  • $1 million study for working group of 15 to 20 epidemiologists, statisticians and neurologists meeting virtually every week

  • “Collectively, these six databases provided information on more than 100 million people — or well over a third of the U.S. population — with the rationale that “nearly all persons with MS, except the uninsured, would be captured in one of these programs.””

  • “ Among its limitations , the NMSS study excludes children, Native Americans, undocumented residents and prisoners, as well as people who seek treatment at alternative medical clinics rather than the healthcare insurance system.” [undercount]

  • The study showed an overall MS prevalence of 402.8 cases per 100,000 inhabitants — up from 58 per 100,000 in 1976 and 85 per 100,000 for the period 1989-94.

  • “Interestingly, the NMSS study doesn’t look at incidence — the number of new cases that appear in any given year — but rather prevalence . Nor does it break down prevalence according to type of MS”

The Prevalence of Multiple Sclerosis in the United States: A Population-Based Healthcare Database Approach

ECTRIMS Online Library. Wallin M. Oct 26, 2017

Background: Within the US, the prevalence of multiple sclerosis (MS) is poorly understood and inadequately characterized, but such information is important to support planning of health services and advocacy efforts. We aimed to develop a case definition to identify people with MS using health claims databases, and to apply this definition across the US to generate robust population-based MS prevalence estimates.

Methods: An MS case definition was developed and validated in three independent administrative databases. We applied this definition to identify MS cases between 2008 and 2010 using the following health care databases:

  • Optum,

  • Truven,

  • Department of Veterans Affairs (VA),

  • Kaiser Permanente Southern California (KPSC),

  • Medicare and Medicaid.

We estimated the three-year cumulative prevalence, and standardized to the 2010 US population.

Results: Among individuals with at least one health claim for demyelinating disease, the case definition had a sensitivity of 86%, specificity: 76-82%, and positive predictive value: 96-98% when compared to physician-adjudicated diagnoses.

The unadjusted cumulative prevalence of MS for 2008-2010 for the private insurance databases was

  • 208 per 100,000 (95% CI: 205-211) for Optum and

  • 208 per 100,000 (95% CI: 207-210) for Truven.

The cumulative prevalence for the

  • national VA health care system was 177 per 100,000 (95% CI: 174-181), and for

  • KPSC was 110 per 100,000 (95% CI: 106-114).

The female: male ratio for MS prevalence was about 3:1 across databases and a US geographic prevalence gradient was found. A final integrated national MS cumulative prevalence estimate will be generated and stratified by age, sex and geographic region.

Conclusion: The US national cumulative MS prevalence rates for 2008-10 are the highest reported to date and provide a contemporary understanding of the disease burden. Our rigorous algorithm-based approach to estimating prevalence is novel, efficient and has the potential to be used for other chronic conditions.

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Tags: Multiple Sclerosis