Causes of Death in MSers

What is the commonest cause of death in MS? #MSBlog #MSResearch

“This US database study confirms that MS is responsible for excessive number of deaths and these are dominated by infections, particularly pulmonary infections as a result of aspiration. MS tends to affect swallowing, coughing and breathing late in the course of the disease. So these data indicate that MSers are living a long time with an accumulation of disability. There have been several recent posts on aspiration pneumonia, choking and breathing problems on the blog that you may want to go back to.”

  1. Guest post: MSers with dysphagia – Multiple Sclerosis …, 18 Jun 2014
  2. Multiple Sclerosis Research: Clinic speak: dysphagia survey …, 01 Jul 2014
  3. Multiple Sclerosis Research: Clinic Speak: swallowing …, 22 Jun 2014

“I am aware that everyone wants their MS to be cured, i.e flat-lined or even improved. However, the more realistic option with most of the DMTs is a slowing of disability accumulation and a delay in all the complications associated with late stage MS. Delaying the onset of swallowing and breathing problems by 3 to 5 years will have a big impact on survival. I suspect this is what happened with the 21-year follow-up study of the pivotal interferon-beta-1b trial cohort. Earlier access to interferon-beta, by approximately 3 years, led to a 50% greater chance being alive at 21 years after the beginning of the trial. This improved survival from earlier access to treatment must be disability related as the majority of deaths in this study were MS-related.”

BACKGROUND: Information on causes of death (CODs) for MSers in the United States is sparse and limited by standard categorizations of underlying and immediate CODs on death certificates. Prior research indicated that excess mortality among MSers was largely due to greater mortality from infectious, cardiovascular, or pulmonary causes.

OBJECTIVE: To analyze disease categories in order to gain insight to pathways, which lead directly to death in MSers.

METHODS: Commercially insured MSers enrolled in the OptumInsight Research database between 1996 and 2009 were matched to non-MS comparators on age/residence at index year and sex. The cause most-directly leading to death from the death certificate, referred to as the “principal” COD, was determined using an algorithm to minimize the selection of either MS or cardiac/pulmonary arrest as the COD. Principal CODs were categorized into MS, cancer, cardiovascular, infectious, suicide, accidental, pulmonary, other, or unknown. Infectious, cardiovascular, and pulmonary CODs were further subcategorized.

RESULTS: 30,402 MSers were matched to 89,818 controls, with mortality rates of 899 and 446 deaths/100,000 person-years, respectively. Excluding MS, differences in mortality rate between MS patients and non-MS comparators were largely attributable to infections, cardiovascular causes, and pulmonary problems. Of the 95 excessive deaths (per 100,000 person-years) related to infectious causes, 41 (43.2%) were due to pulmonary infections and 45 (47.4%) were attributed to sepsis. Of the 46 excessive deaths (per 100,000 person-years) related to pulmonary causes, 27 (58.7%) were due to aspiration (difficulty in breathing). No single diagnostic entity predominated for the 60 excessive deaths (per 100,000 person-years) attributable to cardiac CODs.

CONCLUSIONS: The principal COD algorithm improved on other methods of determining COD in MSers from death certificates. A greater awareness of the common CODs in MSers will allow physicians to anticipate potential problems and, thereby, improve the care that they provide.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • "There have been several recent posts on aspiration pneumonia, choking and breathing problems on the blog that you may want to go back to."

    no. that's okay.

  • Oh well, no-one wants to live forever, I suppose.

    The notion of death is worrying, but to die this way is horrible. MS is a bad disease, sir.

  • Sorry to disappoint today is bad news tuesday maybe good news another day..The research findings are what they are

  • Given the study was in the US, was there any stratification of COD of MSers who had health insurance (and therefore medication, other therapeutic support, etc) vs those without health insurance ?

  • Grim reading!
    Why do charities refuse to acknowledge people die from MS?
    I went to a newly diagnosed event where MS was portrayed as merely a bump in the road. No less life expectancy we were told.
    When confronted about their inaccuracies I was told they don't want to scare people. Paternalism is not limited to neurologists.

By Prof G



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