Staring at one’s mortality


J Neurol Neurosurg Psychiatry. 2017 Apr 1. pii: jnnp-2016-315238. doi: 10.1136/jnnp-2016-315238. [Epub ahead of print]

Survival and cause of death in multiple sclerosis: a 60-year longitudinal population study.

Lunde HB, Assmus J, Kjell-Morten M, Bø L, Grytten N.


Survival and causes of death (COD) in multiple sclerosis (MS) provide ultimate endpoints. We aimed to investigate survival and COD in a 60-year population-based MS cohort compared with the general population.


All patients with incident multiple sclerosis (MS) (N=1388) with onset during 1953-2012 in Hordaland County, Western Norway, were included. Data were obtained from patient records at Haukeland University Hospital and linked to the Norwegian COD registry. Survival adjusted for sex, age and disease course were estimated by Kaplan-Meier analyses from birth and from disease onset. Mortality and COD in MS relative to the general population were examined by standardised mortality ratio (SMR).


Of 1388 patients, 291 had deceased, mainly of MS (56.4%). Median life expectancy was 74.7 years for MS and 81.8 years for the general population (p<0.001); 77.2 years for women with MS and 72.2 years for men with MS (p<0.001). Life expectancy for patients with relapsing remitting MS (RRMS) was 77.8 years and 71.4 years for primary progressive MS (PPMS) (p<0.001). Overall SMR was 2.7 (p>0.0001); 2.9 in women and 2.5 in men (p=0.0009). SMR was 2.4 in RRMS and 3.9 in PPMS (p<0.0001). SMR from disease onset during 1953-1974 was 3.1; 2.6 during 1975-1996 and 0.7 during 1997-2012 (p<0.0083). No difference in cause-specific deaths were found (p=0.0871).


We found a 7-year shorter life expectancy and almost threefold higher mortality in MS compared with the general population. A rise in survival in MS was observed during the entire observation period.

Figure: Kaplan-Meier survival curves of patients with multiple sclerosis (MS) in
Hordaland county from birth (left column: A, C, E, G) and from disease
onset (right column: B, D, F, H). A, B: Patients with MS (red) versus the
general population (black) of Norway.E , F: Women with MS (red) versus women in the
general population of Norway. C, D: Men (red) with MS versus men in the
general population of Norway. G, H: RRMS versus PPMS (red)

I write this post in the wake of another terror attack in London. The uncertainty which one faces in this millennium is never more apparent than it is this week, not only from a terror standpoint, but from a geopolitical, environmental and financial perspective as well. In every way, you hold your own mortality in your own hands.

There have been previous studies looking into the effect of MS as a disease on overall life-expectancy. Generally, although seldom fatal MS is known to reduce life-expectancy by six years on average when compared to those without MS. This study is the latest in a series of these publications. 

From an epidemiological perspective, the sample size is small; only 1388 PwMS were evaluated. Although, to give the authors the credit the follow-up period for the study is long. The period evaluated also covers the period in which DMTs were first introduced (in the 1990s for interferons and glatiramer acetate). And yet the life-expectancy is reported as being seven years shorter and almost threefold higher mortality in MS than in the general population. Surely, given the improvements in care (note this study was carried out in Norway) and a slower disability progression over the past few decades, there should be an equal improvement in life-expectancy now? Well there is – mortality risk (SMR) was 3.0 for diagnosis in 1953-1974, 3.1 in 1975-1996, and 0.8 in 1997-2012, translating to a median survival of 41y from disease onset vs. 17y in 1969. Interestingly, PwMS of younger age at onset had a higher risk of dying than older age at onset. While, those with RRMS had a longer life-expectancy than those with PPMS (78y vs. 71y). This study, however, doesn’t answer the 100 million dollar question whether the availability of effective DMTs for RRMS than PPMS is the cause of this difference in survival. The interferon beta 1b trial, clearly demonstrates an improvement in mortality in the treatment arm compared to placebo (dummy arm) 21 years down the line in RRMS. In the future, it is hoped that registries will add more to data in order to answer these big questions.

Last but not least, despite the curve balls that life throws your way, life is there to be enjoyed. At times, the journey and decisions are dependent on outside circumstances, but be generous and altruistic in everything that you do. Realize that money is only means to an end, never directly strive for wealth.

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Neuro Doc Gnanapavan


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  • "Last but not least, despite the curve balls that life throws your way, life is there to be enjoyed. At times, the journey and decisions are dependent on outside circumstances, but be generous and altruistic in everything that you do. Realize that money is only means to an end, never directly strive for wealth."

    sorry wha?

    doctor can you please treat my (partner's) ms, instead of giving advice outside of your expertise. please?

    thanks 🙂

    • She treats MS, but at the same time she is a human being who doesn't forget the core values of humanity.

    • core values?

      do workaholics with MS deserve to be treated for who they are: workaholics with MS or should they only be treated if it comes with a lecture on the "core values of humanity"?

      be very careful with "core values of humanity" – more often than not humanity finds there is no such thing as "core" values and our values differ significantly. I want a doctor who will treat the person in front them – warts and all – not a doctor, who will decide what the core values are.

      Example. For 15 months my partner was stuck a neuro who did not see it as part of her job to keep my partner employed. Instead, if communication became difficult, the neuro would suggest that my partner's work is causing her too much stress and perhaps she should quit.

      My partner hasn't quit, but she did go to the effort of finding a new neuro. Luckily, this new seems interested in preserving my partner's quality of life (the things she tells him are important to her) – rather than confusing the issue with 'core values of humanity'.

    • Bozo, I understand the frustrations of an unhelpful neuro, I have experienced the same, but in fairness to NDG this is a blog post not a consultation.

    • Many of us have had negative with their care, I don't see how your rant is relevant to this topic. Unless you blame NeuroDoc for your partner's experience.

      Do you prefer a doctor who sees you as £300 and nothing more?

    • I'm saying you are saying, probably a whole lot of enough has been said? It always impresses me how much of the written language, as opposed to the spoken narrative can be left to interpretation or misinterpreted. Never text or email anything of importance 🙂 But don't get me wrong I do enjoy our debates!



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