Epub ahead of print: Scalfari et al. Age and disability accumulation in multiple sclerosis. Neurology. 2011 Sep 14.
Objectives: This study tested the hypothesis that age is a prognostic factor with respect to long-term accumulation of disability in MS.
Results:
- Older age at relapsing-remitting (RR) phase onset was associated with higher risk of reaching advanced disability scores. This was independent of disease duration and early relapse frequency but secondary to increased risk of conversion to secondary progressive (SP) MS.
- Onset at age 40 and at age 50 doubled and tripled risks of developing SP, compared to age 20 (OR = 2.05).
- Younger age at conversion to SPMS was associated with shorter times to high disability scores from disease onset.
- Among MS’ers with primary progressive and relapse onset disease, median ages at attainment of disability scores were strikingly similar: walking stick, 49 vs 48 years; bed-bound 58 vs 58 years; and death, 78 years for both.
Conclusions: Development of SPMS is the dominant determinant of long-term prognosis, independent of disease duration and early relapse frequency. Age independently affects disability development primarily by changing probability and latency of SP onset, with little effect on the progressive course.
“This data suggests that your prognosis is affected by age, but the age at which you reach a specific disability is on average the same. This means that if you develop MS when you are older your disease progresses more quickly.”
“Please note these data refer to average effects across populations of MS’ers and cannot necessarily be used to predict what will happen in individual MS’ers.”
As someone with MS I can't see how this sort of research helps me or otherss with the condition. I know woman aged 22 who is SPMS in a wheelchair, J K Rowlings mother died of MS at 45, I know a lady at 70 who occasionally uses a walking stick when her MS is bad. MS can kill young, can be badly disabling, or can be a nuisance. The two things researchers need to focus on is how to stop dmage and then how to encourage repair. Pointless research such as this diverts funds from where it should be going. MS is a grim medical condition not an academic subject where some bored academic can do a bit of number crunching and publish waffle like this (I've see this sort of research many times before).
I agree with the person above.I got PPMS in my 20s and the deterioration has been pretty bad.The evil gift is different for all of us, but all this crap concerning statistical hullabaloo doesn't help anyone other than clinicians who'd rather collate figures than get treatments to those with progressive MS.As a young person with disabling MS, I can assure the evidence presented in this post holds very little meaning. It's utter hogwash that getting MS young is somehow a less punishing disease.I am living proof of that.
Hmm, I don't know what to think about this post. MS is hardly quantifiable in its predictability.
When I read stuff like this I feel like the scientists trying to combat MS haven't got a clue. Just go to any clinc, like the Walton Centre here in Liverpool, to see really young people tied to their wheelchairs because their MS has become progressive. Have you never been to the supermarket and on occassion you can see some bloke in his 20s on a mobility scooter? (BTW – I saw a really handsome bloke the other week shopping in his mobility scooter at our Asda.)My sister has progressive MS and has been in a wheel chair for over 2 years now. She's 32 years old. Pretty young if you ask me.
Do something about MS disability, don't just quote figures and tell us how hopeless it is.
Perhaps you could tell us the uses of such research. (Similar to the explanation some months ago why Quality of Life research is necessary)
These articles on pediatric MS have very different conclusionshttp://www.nejm.org/doi/full/10.1056/NEJMoa067597"Patients with childhood-onset multiple sclerosis take longer to reach states of irreversible disability but do so at a younger age than patients with adult-onset multiple sclerosis."http://www.medscape.org/viewarticle/710108_6"… patients with childhood-onset MS convert to secondary progression on average 10 years later than patients with adult onset, but they are, on average, 10 years younger when they reach this phase of the disease."
Do MS researchers eevr think of the impact on MS sufferers when publishing this stuff (and re-publishing it on a research blogs aimed at patients and their families".I'm 49 with MS so, I can expect to be bed-bound at 58 and dead at 78 (after suffering in bed for 20 years). I thought this blog would give me hope (new treatments on the way etc), unfortunately it's making a difficult situation even worse.
I am sorry to hear so many negative comments about the article. I see patients point of view expecting more practical implications for their care. Bear in mind that results presented refer to large groups and unfortunately cannot be applied to individual patients (as pointed out by Prof. Giovannoni), likewise all the other predictors in MS. Nevertheless, these results can help to improve strategy for testing the efficacy of future treatments. Age is an important determinant of long term evolution and therefore should be given more relevance among inclusion criteria used in clinical trial. Randomization of patients in age-groups can further protect from the inevitable bias due to the variability of the clinical outcome, and ultimately lead to more reliable results.
Re: "I thought this blog would give me hope (new treatments on the way etc), unfortunately it's making a difficult situation even worse."One of the curved-balls neurologists have thrown, and are still throwing, at MS'ers are half-truths about the impact of MS and its long-term prognosis.MS'ers need to know the facts so that they can make balance the risks and benefits of aggressive therapies. We never started this blog to only present good news; our role is news both good and bad. We also don't believe in creating false or unrealistic expectations; something the lay press does very well.
Re – "We also don't believe in creating false or unrealistic expectations; something the lay press does very well."Trust me, you neurologists manage expectations very well. I've come to expect that progressive MS is a life long condition for which there is absolutely nothing. It's come to point where I think that the NHS should pay neurologists on a results basis. I'm pretty sure many will be out of a job in no time, or at least only accept MS'ers with the least difficult prognosis.
"Dr Scalfari said… I am sorry to hear so many negative comments about the article".What would you expect people with MS to say about the article? Our brains and spinals cords are being eaten away and no treatment can currently stop progression or encourage repair. Your article maps out my future – and it's not nice. Unfortunately these articles refer to numbers / percentages etc, in reality they relate to individuals who had hopes and dreams (like me). Your research will have no impact on how MS will impact on my life. It just confirms what we all know from sitting in the neuro's waiting room – MS is grim and can only get worse.
"We never started this blog to only present good news; our role is news both good and bad."But what is the good news Prof G. How will all this research help me and the other 99,999 people with MS in the UK.? The trial process always takes 10+ years and then the drug is found to have nasty side effects or rejected on cost-effectiveness grounds. All I want to know (the truth) is whether I need to stick around in the hope that in 10 years time there may be some treatments available toimprove my situation.
Nobody can predict the future. Hold on to the hope that there will be a cure. Till then, try to do whatever is needed to stay as fit as possible – exercise as much as possible, get enough Vit D, eat healthy, take Omega 3, …
Re 'We never started this blog to only present good news' The MSer in the family, who is a schoolgirl, has a semi-serious suggestion: Follow the example of the Lemony Snicket books and warn people upfront that this is not a good news blog. The http://www.lemonysnicket.com homepage says 'Warning: Do not enter. This site is very unpleasant'. You can add more – this blog will make you more depressed, it is full of boring geeky stuff, MS news is almost never happy, …Lots of people read the books despite the warnings.This is the first para of the first book in the series: If you are interested in stories with happy endings, you would be better off reading some other book. In this book, not only is there no happy ending, there is no happy beginning and very few happy things in the middle. This is because not very many happy things happened in the lives of the three Baudelaire youngsters. Violet, Klaus, and Sunny Baudelaire were intelligent children, and they were charming, and resourceful, and had pleasant facial features, but they were extremely unlucky, and most everything that happened to them was rife with misfortune, misery, and despair. I'm sorry to tell you this, but that is how the story goes.