Friday, 16 May 2014

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.

15 comments:

  1. In 2008, when I was aged 58 and taking early retirement having had MS for 5 years, I bought an annuity from an additional pension I'd saved for. At the time I hadn't read that much about MS and premature death, but guessed it might be a contributory factor and therefore should give me an enhanced pension, as is the case with smokers, asthmatics etc. The insurance advisor agreed. He trawled ALL the annuity providers and - believe it or not - none gave it as a justification for an enhanced payment. At the time, as the adviser said, that seemed to indicate that it really wasn't a factor and I should actually be pleased about it... which I was, in a kind of way! Obviously I took the policy giving me the best deal (and it wasn't my main pension, just an add-on) but now reading this I am furious!! Nothing I can do, but maybe SOMEONE can persuade insurance companies to take MS seriously?

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    1. They certainly take any vague hint of it seriously when assessing for income protection policies.

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  2. I agree with your approach. MSers need to know this.

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  3. Yes, please encourage your colleagues to stop the paternalistic attitude. We all know how bad it can be and we all pray that our deaths won't be long, drawn out and painful experiences. All of us die -- many of us with MS would rather die sooner than later. Treat us like adults and we can make informed decisions. Thank you!

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  4. AnonymousFriday, May 16, 2014 9:16:00 pm
    Average life expectancy for Britons is c80. 8 years is a 10 per cent reduction. So on average we should get to 72. I don't believe this many MSers I know die in the 50s. Some research a few years ago by my neuro Dr X showed that the average life expectancy for MSers is 30 years. Do you, Prof G have any MS patients in their 70s? I think if you reach 65 with MS you have exceeded expectations. In reality, its not the death I'm worried about, its the 10-15 years in a wheelchair and the 5 years bedbound before the grim ripper appears that concerns me. And don't accuse me of exaggeration - have a look at the EDSS. In the year 2014, i still can't believe the thousands of MS researchers around the world haven't identified a way to stop this disease.

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    1. I guess the magical cure for MS will be found not sooner then cures for Alzheimer or senility or so on, so very little hope if any for us..

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    2. There are certainly MSers over 70. I have a feeling they are underrepresented in the clinics as they have been SPMS for many years and have been told too many times by neurologists that "nothing can be done about it".

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  5. I went to a newly diagnosed MS event on Thursday jointly run between nurses and the MS Society. A nurse directly told the audience that MS does not kill and does not limit life expectancy. She actually said it was a really exciting time to be diagnosed with MS and put quite the positive spin on it!

    Its clearly not just patients in denial.

    When I politely challenged her about timely access to DMD's and the need to hit hard and early she took the mic off me but not before I had caused a bit of a stir among fellow hapless MSers.

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    1. It's disappointing but doesn't surprise me - I had a similar experience of their patronising and rigid views. I was asked to leave a newly-diagnosed MS event four years ago after encouraging people to do their own research about DMTs and symptom management. It was really horrible and humiliating. They claimed I must be a journalist trying to "infiltrate" the meeting.

      The MS Society eventually (took several months) responded to my complaints to them and the person was disciplined. But, worryingly, it still affects how the local MS nurses interact with me - these are NHS employees, not charity volunteers.

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    2. Re: "Its clearly not just patients in denial."

      The only way to counteract this is with education. There is no reason why MSers can't train their healthcare professionals. This is called reverse education.

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    3. Trust me I'm trying but there's only so much one person can do. The charities are no better either and seem more interested in having cake stands than actually challenging the status quo. It's quite frustrating to put it mildly.

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  6. I bought an annuity from Aviva in 2011, which was enhanced because of my MS. Looking at my life expectancy, I should have waited and bought a Lamborghini!. I guess your EDSS gives you a strong indication, I went from zero to 6 in a year, so I guess you can plot the regression to 10 easily enough. Once you are confined to bed the game is just about up.

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  7. Absoutely agree with this post Prof G, whilst I agree some people may not want to know how bad MS can be, surely it's not the remit of a National Charity charged with raising money on behalf of the MSers 's decision to actively bury the news ? ( no punn intended)

    Regards as always.

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  8. I wholeheartedly agree with the post, but am very interested to know how MS mortality rates are affected by further demographic information.. income bracket, geographic location etc. Is there anything on this?

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  9. I also agree with this post. I have been told to talk at the CURB when I pointed some negative data about PML and the new oral drugs. "We only talk about negative stuff at the curb". I was kicked out of UBC MS CLinic because I absolutely refused to see a psychiatrist as was their protocol……….I worked in that area and was fed up with psychiatrists and their treatments of their patients. After 26 lesion load with various symptoms I was finally given the diagnosis of SPMS. I like to keep it real and find MS Societies self serving. Best to all you realists.

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