Cognitive impairment, fatigue and depression drive early unemployment rates in MS. #MSBlog #MSResearch
“Yesterday someone commented on physical disability being the main driver of unemployment. Yes, it is a driver but not the main driver early on. In my experience it is cognitive impairment and fatigue.”
“The following paper has buried within in it data on one of the stark realities facing MSers; 50% of MSers who are under the age of 65 (working age) are unemployed at an EDSS of 3.5 or less (red dotted lines). An EDSS of 3.5 or less is a level that is not associated with any obvious physical disability (see Clinic speak post on EDSS). Once you reach higher levels of disability the unemployment rates soar; 75% at EDSS 6.0 (single stick) blue dotted lines and 90% at EDSS 7.0 (wheelchair) pink dotted lines.”
Kobelt et al. Costs and quality of life of patients with multiple sclerosis in Europe. J Neurol Neurosurg Psychiatry. 2006 Aug;77(8):918-26.
OBJECTIVE: To assess overall resource consumption, work capacity and quality of life of MSers in nine European countries.
METHODS: Information on resource consumption related to MS, informal care by relatives, productivity losses and overall quality of life (utility) was collected with a standardised pre-tested questionnaire from 13,186 MSers enrolled in national MS societies or followed up in neurology clinics. Information on disease included disease duration, self-assessed disease severity and relapses. Mean annual costs per patient (Euro, 2005) were estimated from the societal perspective.
RESULTS: The mean age ranged from 45.1 to 53.4 years, and all levels of disease severity were represented. Between 16% and 29% of MSers reported experiencing a relapse in the 3 months preceding data collection. The proportion of MSers in early retirement because of MS ranged from 33% to 45%. The use of direct medical resources (eg, hospitalisation, consultations and drugs) varied considerably across countries, whereas the use of non-medical resources (eg, walking sticks, wheel chairs, modifications to house and car) and services (eg, home care and transportation) was comparable. Informal care use was highly correlated with disease severity, but was further influenced by healthcare systems and family structure. All types of costs increased with worsening disease. The total mean annual costs per MSer (adjusted for gross domestic product purchasing power) were estimated at Euro 18,000 for mild disease (Expanded Disability Status Scale (EDSS) <4.0), Euro 36,500 for moderate disease (EDSS 4.0-6.5) and Euro 62,000 for severe disease (EDSS >7.0). Utility was similar across countries at around 0.70 for a patient with an EDSS of 2.0 and around 0.45 for a patient with an EDSS of 6.5. Intangible costs were estimated at around Euro 13,000 per patient.
“You may want to look at the fine print in this paper and see how MS impacts on quality of life or utility. It is clear that even at low EDSS levels the quality of life of European MSers is poor. Why? Any guesses? It is because of the impact of MS on cognition, mood and fatigue. All these aspects of MS are not captured well by the EDSS. We need to remove the EDSS blinkers and think differently about how we measure the impact of MS on an individual’s life.”
“The data in this paper is one example of why I openly promote early effective treatment or at least the the option having the choice. If you wait until you have become disabled it is too late to do anything about it. We are decades away from neurorestorative therapies; treatments that potentially prevent or delay disability are in the here and now.”
Prof G,I thought holidays were meant to cheer people up! Those of us with MS know full well what this disease can and often does. All of us want the best available treatment. All of us want to reduce the risk of getting more and more disabled. I thought Promise 2010 gave you a grant for looking at repair? I'm not sure you would cope too well with a diagnosis of MS. You are focused on all the dreadful things this disease does – unemployment, divorce, dementia…. Those with the disease just have to get on – what choice do we have? If neuro- restorative therapies are decades away, then those of us who follow this blog will see no benefit. I wish you could all give us a bit more hope for the future – in your MS world we are all scaling up the EDSS and there's nothing we can do. Please never consider counselling once you pack up neurology. I just hope another research group is prepared to take some risks and come up with therapies which can shut the disease down and encourage some repair (perhaps the Cambridge / Edinburgh can offer me some hope).
Prof G, MS, like many other debilitating neurological diseases, ruins the sufferer's life, however, to mislabel it as dementia is absolutely wrong. Like I have said, dementia is a terminal disease while MS is chronic. No-one refutes the notion that MS severely affects the patient's quality of life but their disease is not fatal. Parkinson's disease has a more marked physical and mental erosion on its sufferers' and no-one from that camp is pushing to ride the coattails of another more serious disease in order to cajole NICE to fund new medicines. What you are doing seems very unethical and morally questionable. I am a huge supporter of yours but I cannot sit by and watch you do this without raising alarm.By all means advocate early and aggressive treatment for MS, but do not misrepresent MS as a disease on par with much more insidious maladies that actually kill sufferers. MS is not terminal, dementia is. I do not doubt that there is great overlap in nearly all neurological ailments, but MS is not comparable dementia… at least not in the way that you are painting things. Having to give up work and having to give up life are two very different things. I prize my life more than I did my job.
There is another aspect to consider regarding continuing to work with an MS diagnosis, and that is how many years into retirement are you hoping to be active/as active as possible? This infuences how long to keep working for, or at least is another aspect to put into the mix. Of course I realise that money is a huge factor too, but on a personal note I find myself working full time (in my mid 50s) and thinking about when to consider retirement. I don't want to struggle to work another 10 years then not enjoy my retirement, or find that my mobility has deteriorated drastically.
Prof G, not to get all Mandy Rice Davies on you, but – you would say that wouldn't you! The large print is the the participants all live in Europe and suffer from S.A.D! Probably did not include the Monaco and Greek Islands cohort. Just looking at the miserable looking skies at Old Trafford, Lords is clearly causing the cheerful Aussie cricket decision making skills to go south, what hope for any one with MS. Sorry but just getting a tad cranky with stuff that to me reflects a bias of an 'affective state' that might mirror his own. Seriously, I'm going to dig out some quality work done on "Benefit Finding in Multiple Sclerosis", yes benefit finding and a scale to measure it. Don't be so sad, there is a probability, albeit low that you will win the Ashes.
Oh wish I hadn't read that. EDSS 6, SPMS. Bummer.
Prof G,I'd be interested in your research priorities for the new academic year. It seems that the chance of any improvements in EDSS is a no hoper. If you've passed the window of opportunity for early highly effective treatments is anyone doing any research? It would be nice is you could add the number of Dignitas at the top of the page. I would gladly swap MS for any cancer. MS is a killer of a disease – can we really be expected to watch ourselves get up the EDSS? Your recent posts have depressed me and done my head in – nice addition to the MS symptoms!
Swapping MS for cancer is a silly thing to say. Cancer kills. What you're saying is that you would rather be dead than live the current life you're living. Optimism is crucial.
Whether one has cancer or MS it is important to, remain optimistic otherwise the illness gets you. I've had two close friends die one as the result of MS and one frim Cancer. Now please don't be morbid I've had MS for 35years and three different cancers and I'm still here. The thing to do is enjoy your friends, family and job if you're lucky enough to still have one
The point I was making was that you stand a chance of beating some cancers. Also, cancer research and treatments have come of leaps and bounds. The oncologists give their patients hope. At the moment all Prof G is doing is making me feel less hopeful.
Cancer remains the second biggest killer of people and will overtake heart disease as the dominant fatal disease of human life by the middle of the next decade. To say you would rather have cancer than MS is greatly ignorant. There are some people that may have beat MS but there are many others that will not. Cancer is something that can kill within a short time frame. What you are essentially saying, anon 10:22, is that you would opt for death than MS, which is a foolish thing to think.
I am an optimist; I posted this 'article of interest' to give you a reality check. Things have moved on since this paper was published in 2006. In fact the data appears to have been collected in 2005; a time when only IFN-beta and GA were widely available. You will see that the majority of MSers were not on DMTs between 20.6% (UK) and 52.4% (Spain) of respondents were. In 2004 most MSers will have started quite sometime after their disease onset. So what you are looking at here is mainly natural history data with Little impact from DMTs. The point I am making is that with the newer more effective agents and earlier access these results will change substantially in the future. If you leave MS to its own devices the outcome is poor. This is why you need to take its treatment seriously and if you have active MS and choose a first-line injectable or no treatment at all you need to have a well-defined go-on/switch strategy so that you try an control the disease. This is the only way we are going to improve the overall prognosis of this disease.Another point, this is not a competition between alternative or lifestyle therapies and DMTs. Why not go with both routes simultaneously? That is what I would do if I had the disease.
That is it, Prof G, you don't have MS. Nothing is certain, I cannot live my life taking drugs for every symptom I may or may not get. You still cannot give us an accurate prognosis, only statistics. Can you tell us what the long term side effects are for the new drugs? The answer would probably be no. You seem very certain the outcome is poor if MS is left to it's own devices. Have the new drugs have been tested on a significant number of patients, that is, more than a few hundred, for more than twenty years? If so, I apologise for being unconvinced.
Re anonymous 7 33 pmI think the answer to the MS vs cancer question would be highly individual, and would depend on the unique variant of MS visited on the person. I've had a mild cancer and respect how quickly deadly cancer can be. But I can't agree that saying 'you would opt for death over ms' is foolish. Professor Marie Fleming clearly thinks living with her MS is worse than her quick death. I do think people often choose to suffer with amazing courage in order not to hurt their loved ones. Prof G has been trying to tell the UK medical establishment that patients should have the right to choose what risks to take. He's also trying to paint a picture of what risks go with choosing to turn down drug therapy if you have RRMS. There is no safe path here. We face risks on both sides. Some subset of untreated people will do well into old age, or never had the disease. But many won't. Some subset of us on drugs will die of infections, or get severe liver or kidney damage, or cancer we wouldn't have otherwise had. The drugs may not work at all when it comes to slowing progression, regardless of their effect on relapses and lesions. In some ways, for me, the hardest part of the drug therapy is watching the pirate profiteers make billions off our misery. This is especially hard knowing they work to hide dangers like PML so we don't get to make accurate choices about our own risk. Dr. Giavinonni is an interested agent whose interests run with the drug companies. He is also an observer who witnesses MS suffering every day. He is also a doctor who tries to help his patients with the tools available. I respect his knowledge of what the disease does to many people. He is an expert witness. I'm grateful for his willingness to share that knowledge here in a public forum.