Death and MS

MS is a killer disease; what can we do about it? #MSBlog #MSResearch

"The study below from Spain confirms what we know already; MS reduces your life expectancy by approximately 8 years and most deaths in MSers are related  to MS complications. Are you surprised? Would you be persuaded to take a DMT that increased your survival? At the commissioning meeting I attended earlier this week several commissioners were impressed by the 21-year survival data showing that starting interferon-beta-1b 3-and-a-half years early increased your chances of being alive at 21 years by ~50%. The question is what will the effect be with more effective DMTs that clearly have a greater impact on switching off the shredder and saving brain?"

"The standardised mortality ratio (SMR) is a is a quantity, expressed as either a ratio or percentage quantifying the increase or decrease in mortality of a group of people with respect to the general population. A SMR in this study of 2.78 is in keeping with several other studies and demonstrates what an impact MS has on survival. The following tables compares MS studies reporting SMRs and compare MS to other common diseases. You can see MS holds its own when it comes to causing premature death. This is something that is frequently ignored when discussing MS. For example; a large MS society wanted to use my tube map on my 'holistic approach to MS' as part of their educational materials on MS for their members. However, they wanted to edit the map and remove the terminal, or brown, line as it discussed issues in relation to death, and in particular suicide. The Society were very concerned about this as it would upset MSers. I was quite shocked by their paternalistic attitude. I actively fight paternalism, which is very common, if not the norm, amongst healthcare professionals: 'Let's not tell them about how bad MS can be, because they will find it too much to deal with'. Can you please tell me how can we expect MSers to make choices about risks and benefits of treatment if we keep telling them that MS is not such a bad disease? I do, however, believe in layering the provision of MS-related information, by not giving it all in one go. MSers need to be able to assimilate information at a pace that is suitable for them. At the end of  the day to help MSers become Expert Patients they need to be knowledgeable about their disease and this includes knowing about the impact that MS has on survival. May be you disagree."

Epub: Rodríguez-Antigüedad et al. Mortality and Cause of Death in Multiple Sclerosis: Findings from a Prospective Population-Based Cohort in Bizkaia, Basque Country, Spain. Neuroepidemiology. 2014;42:219-225.

Background: Mortality studies of MSers are scarce.

Objective: To assess mortality of MSers included in a large MS cohort from the county of Bizkaia in Spain.

Methods: MSers were collected from a dynamic population-based cohort of patients with MS from the county of Bizkaia (named the 'Bizkaia cohort') in the Basque Country (Spain). Data from official registries were used for estimating mortality indicators. 

Results: During a 24-year period (1987-2011), a total of 1,283 MSers were included in the Bizkaia cohort. Eighty-nine MSers 6.9%) had died before December 31, 2011. The standardized mortality ratio was 2.78 for the whole group (3.26 for men and 2.73 for women), with a decreased life expectancy of 6.53 years. The mean survival from the onset of MS in deceased MSers was 22.4 years. Death was related directly or indirectly to MS in 57 MSers and unrelated in 27, while the cause of death was unknown in the remaining 5. Respiratory infection and sepsis were the most frequent MS-related causes of death. Differences in survival according to gender or disease course were not observed. 

Conclusion: MSers included in the 'Bizkaia cohort' had an almost threefold increase in the risk for death. Life expectancy is reduced by 6-10 years.