I am assuming that if you are regular visitor to this blog that you already know about the reduced life expectancy of MSers. Our new survey is exploring if neurologists are making MSers aware of this fact. I for one don’t do as a matter of routine; I prefer to choose the moment when I think it is appropriate for the MSer to know this information and try and put the information in context. For example, it may be more appropriate to discuss life expectancy when providing information of risks and benefits of disease-modifying treatments (DMTs). The following is graph showing your the survival cure of Norwegian MSers compared to the general population; this data is very similar to other areas of the world.
MS and survival – long-term betaferon treatment improves survival, 29 May 2011; “average life expectancy is reduced by about ~10 years” As a patient I don’t find … much shorter duration. Any disease that lasts decades can’t be called terminal; if it could then life itself could be considered a terminal disease.
The good news is that this data predates the DMT era and we now have new data that has shown that starting DMTs early impacts on survival.
Please see previous post on this topic:
MS and survival – long-term betaferon treatment improves survival, 29 May 2011; “average life expectancy is reduced by about ~10 years” As a patient I don’t find … much shorter duration. Any disease that lasts decades can’t be called terminal; if it could then life itself could be considered a terminal disease.
Do you think neurologists and other MS healthcare workers should discuss this topic with MSers?
Not unless the MSer brings up the topic. It's scarey enough to be told you've got MS without that, and as you say it pre-dates the DMT era. Also I'm sure you could do a similar graph for smokers compared to the general population, or for the obese.
What if someone has progressive MS from the outset and doesn't qualify for DMTs? What reassurance can the consultant give then?There's a real inconsideration on your part when you post articles like this Prof G. There are many of us that are not on DMTs, or perhaps have progressed into disability despite being on early DMTs.Comments like the one you've made makes many of us feel more hopeless.
Re: "Also I'm sure you could do a similar graph for smokers compared to the general population, or for the obese."Precisely, in fact having MS has a similar impact on life expectancy as smoking a pack of 20 cigarettes per day. The obesity curves show a similar picture. The difference is that if you are smoke the disability come in the later years, MSers live with their disability longer.
Re: "What if someone has progressive MS from the outset and doesn't qualify for DMTs? What reassurance can the consultant give then?"Unfortunately, nothing at present! This is our motivation to develop effective treatments for MS.
Re: "There's a real inconsideration on your part when you post articles like this Prof G. There are many of us that are not on DMTs, or perhaps have progressed into disability despite being on early DMTs."We don't believe in patronising our readers by withholding bad news or relevant data. That is why our moto is "interpreting good, bad and other research news". It is my impression that most MSers want to know everything about MS. Then again denial is a coping mechanism some MSers use; I assume those in denial will not be reading this blog.
It's not about denial, but about positive thinking without being illusional. Why bother what will happen to me in 40-50 yrs. time? Who can predict? And besides, I lost a friend to cancer last year who was 31 so the fact that I MIGHT not live into my late 80s is not too disturbing.
I think neurologists should be paid on a results basis, not in terms of how many patients they manage to see – as is the case now.If you do not improve the quality of life for patients, irrespective of their disease course, then wages should be reduced. Neurologists in the MS field, in my experiences, are pretty crap. They just simply see you once a year and ask you how you’re feeling, and then simply document it and see you again in a year’s time. A nurse can do that job, not to mention it’d be cheaper to the tax payer. Neurologists are already on a gravy train, and now they want to prognosticate to me about my compromised life expectancy? Give me a break!
Re: "If you do not improve the quality of life for patients, irrespective of their disease course, then wages should be reduced." Easier said than done; to do this we would need to collect data, store and analyse it and then provide a report. Who is going to pay for the resources to do this? I doubt the NHS will.
I understand this is a statistical study, but what are the causes or mechanisms of early death (as compared to the general population) in people with MS?
Re: "…. what are the causes or mechanisms of early death (as compared to the general population) in people with MS?"Usually, infective complications as a result of severe disability; i.e. pneumonia or urinary tract infections with septicaemia.
I know of a young doctor who originally planned to be a neurologist but changed his mind, since so many neurological problems are difficult to treat. Thank goodness everybody isnt that faint-hearted. The person who said neurologists should be paid by results should go and look for a miracle worker with magic powers
What is the purpose of these life expectancy surveys?MSers worry about disability and quality of life, not how long they will live.
Re: "What is the purpose of these life expectancy surveys?"To raise awareness of the issue. This is important because NICE don't think 1st line DMTs are cost-effective. Now that we have data that shows early treatment with DMTs impacts positively on MS survival they may change their attitude.