Can we afford not to screen MSers for cognitive impairment? Have your say. #ClinicSpeak #BrainHealth #MSBlog
“You are all aware that I ran a longish social media campaign to get MS rebranded a preventable dementia. My motivation was to get regulators to realise that early disability in MS is driven by cognitive impairment that occurs long before physical disability is noted. The hope was to get highly-effective therapies licensed first-line to allow informed pwMS to make active decisions about trying to prevent irreversible damage to their brains and acquiring irreversible cognitive deficits. Whether or not the ‘MS Preventable Dementia‘ campaign made a difference I don’t know, but alemtuzumab got a 1st-line license and the rest is history.”
“I remember presenting the ‘MS Preventable Dementia‘ campaign at the EMA MS Workshop on the 17th October 2013 (see below). I recall taking a pasting from both the regulators and some of my colleagues at this meeting. One regulator categorically denied that MS is a preventable dementia and thought classifying it as such was wrong. This particular regulator, as most neurologists, see dementia as a disease mainly of the elderly and limited to so called classic neurodegenerative diseases, e.g. Alzheimer’s disease. I have in past suggested to some of these deniers that they study the philosophy of medicine and the classification of diseases. They would then see that MS ticks all the boxes for being a potentially dementing disease. The difference between MS and say Alzheimer’s disease is that we have effective treatments for MS and if we use these treatments early and effectively we could at least delay, and hopefully, prevent irreversible cognitive impairment.”
“You are all aware that I ran a longish social media campaign to get MS rebranded a preventable dementia. My motivation was to get regulators to realise that early disability in MS is driven by cognitive impairment that occurs long before physical disability is noted. The hope was to get highly-effective therapies licensed first-line to allow informed pwMS to make active decisions about trying to prevent irreversible damage to their brains and acquiring irreversible cognitive deficits. Whether or not the ‘MS Preventable Dementia‘ campaign made a difference I don’t know, but alemtuzumab got a 1st-line license and the rest is history.”
“I remember presenting the ‘MS Preventable Dementia‘ campaign at the EMA MS Workshop on the 17th October 2013 (see below). I recall taking a pasting from both the regulators and some of my colleagues at this meeting. One regulator categorically denied that MS is a preventable dementia and thought classifying it as such was wrong. This particular regulator, as most neurologists, see dementia as a disease mainly of the elderly and limited to so called classic neurodegenerative diseases, e.g. Alzheimer’s disease. I have in past suggested to some of these deniers that they study the philosophy of medicine and the classification of diseases. They would then see that MS ticks all the boxes for being a potentially dementing disease. The difference between MS and say Alzheimer’s disease is that we have effective treatments for MS and if we use these treatments early and effectively we could at least delay, and hopefully, prevent irreversible cognitive impairment.”
“The reason why 50% of pwMS are unemployed on average 10 years after initial diagnosis at an EDSS of 3.0-3.5 (no overt physical disability) is almost certainly due to cognitive impairment. The cognitive impairment in early MS doesn’t cause obvious symptoms and signs because of compensatory mechanisms. The cost however of compensating for cognitive impairment is cognitive fatigue, depression and anxiety. The early burden of MS is massively under reported and because neurologists and MS nurse specialists don’t routinely screen for cognitive impairment it goes undiagnosed and under recognised. Would you like this to change? Would you want routine cognitive testing? A recent debate that was played out in the Multiple Sclerosis Journal goes through the arguments for and against routine cognitive testing; I think Dawn Langdon one the argument. In support of Dawn, NICE have suggested in their MS Guidelines that pwMS should have annual cognitive screening done. I am all for it, because if we detect cognitive impairments early we may be able to proactively manage patients and this information would almost certainly affect treatment decisions. We also know that identifying patients with cognitive impairments, albeit subtle impairments, means we could watch these patients more closely and help them address potential issues before they arise. There also many cognitive rehabilitation programmes that patients may find helpful. I am also personally in favour of patients being informed about their disease; patients not knowing about cognition is against this management philosophy.”
“The problem, however, with routine cognitive assessments in NHS practice is resources; we simply don’t have the physical manpower to do routine testing. We are however, hoping to get a pilot off the ground to do cognitive testing at Barts Health. The question is would you as a person with MS want to know about your cognition? We know cognitive impairment is closely linked to accelerated brain volume loss and poorer long-term outcomes. Knowing you are in a poor prognostic group may be the trigger for choosing more effective treatment or for making difficult decisions about your life. I would appreciate it if you could complete the short survey below about routine cognitive testing; it will help us get an idea if there is an appetite out there for routine cognitive testing.”
“The problem, however, with routine cognitive assessments in NHS practice is resources; we simply don’t have the physical manpower to do routine testing. We are however, hoping to get a pilot off the ground to do cognitive testing at Barts Health. The question is would you as a person with MS want to know about your cognition? We know cognitive impairment is closely linked to accelerated brain volume loss and poorer long-term outcomes. Knowing you are in a poor prognostic group may be the trigger for choosing more effective treatment or for making difficult decisions about your life. I would appreciate it if you could complete the short survey below about routine cognitive testing; it will help us get an idea if there is an appetite out there for routine cognitive testing.”
Langdon D. A useful annual review of cognition in relapsing MS is beyond most neurologists – NO. Mult Scler. 2016 Apr 5. pii: 1352458516640610.
McNicholas & McGuigan. A useful annual review of cognition in relapsing MS is beyond most neurologists – YES. Mult Scler. 2016 Apr 5. pii: 1352458516639385.
Hutchinson M. A useful annual review of cognition in relapsing MS is beyond most neurologists – Commentary. Mult Scler. 2016 Apr 5. pii: 1352458516642624.
CoI: multiple
In connecting to many pwMS now this is really a touchy zone.In my own experience I know my cognition has been hammered and I have also fought back. When I was going to school for nursing I'd aced every subject and loved all of it. When I had a hard run affording school the college helped I'd done so well and felt so passionate about it.Over the past 2 years I've really tried fight back.Many pwMS dont like face any of this. Its one thing to have physical disability and deal with those invisible symptoms such as fatigue. Its really another to accept mental decline and emotional distress based on plaques. Depression its been suggested by some research has a direct relation to plaques .vs. symptoms. That depression IS a symptom per se .vs. being resultant solely of other symptoms.Doing the work to try to keep cognitive function can be quite difficult more or less acceptance.Having connected to many with MS all forms of stigma's revolve around cognition just as they do in healthy populations. The difference however is the realization of "I am deficient, I will loose ground… more".Family or loved ones might not believe it. I might not accept it. Its a large large playing field. Terms such as "dementia" make one want run the other way.I personally have received flack from people w/ MS for being able to do the web work I do. For deciding, I am going to learn programming and for me thats a struggle. My multi-tasking went out the window with MS. Now I am learning multi-processing which has given me back some levels of mental thinking structuring. I could loose this all tomorrow. I still try. Many simply dont for any number of reasons valid and perhaps not so valid.Here's the thing… As with Brain Health Matters if I were asked my opinion this is all foundational Prof. G. If these sorts of assessments and informational awareness were in place from onset diagnosis it'd be a game changer.The shock factor is entered into via a controlled fashion and interventions as well as monitoring help try keep baselines and/or make gains.Its foundational.For those that already are DX'd and been on the EDSS slide rule to the right of the decimal point its down right frightening.
The short answer is no. I already feel less than human when I leave my appointments. The focus is always on the medical model of disability and my EDS score. Furthermore cognitive dysfunction is not a precursor for DMT's. Nowhere in the ABN guidelines or NHS England commissioning paper for DMT's does it suggest that. As always the focus is on significant relapses. Therefore I see nothing to gain and a lot to lose by having routine cognitive tests. Change the criteria for DMT's and I'd consider it based on the possible benefits.
I would like to know what's going on as I know I am impaired but is already hard enough to stay in work when employers don't recognise the provisions of the Equality Act. Stigma about loss of cognitive function (even the Neuro brushes it off – "everyone forgets things" ) and lack of services to promote solutions to loss of function is my experience. It's not an argument against testing shut testing could bring unintended consequences.
*shut = but. Damn autocorrect
I went to my local chemist at the weekend. This is a friendly shop where the sales assistants often have a chat. The person that served me told me she was worried about her loss of memory. She was about fifteen years younger than me and she mentioned she was recently going through the menopause. I gave her a few hints and tips to help her, but I can't help thinking that there's not enough research in this area and it isn't always MS.
I can't see a survey. I tried a couple of browsers but nothing for me to complete. 🙁
Can't find a survey but would be happy to complete one. Have no problems with having cognitive assessments, well I suppose I do have some problems in the sense my deterioration would be documented and I would wonder if one day it could be held against me. I am not sure how but just a slight feeling of paranoia there. For myself I would like to know what's happening and if it were linked in to more active management of my MS then all the better, though options run out. But the wider principle of closer monitoring of changes and changing treatments if possible seems the correct one to me. It might not be in NICE guidelines now but waiting for them would be the tail wagging the dog.
I can't see a survey either.
No survey here but I'd be very interested in taking part. As a(nother) lawyer I depend very much on being able to process information quickly. If there was a possibility of the research being used to recommend upscaling effective treatments, this would be very much appreciated. At the moment, I lose words sometimes but have no way of knowing if it's MS related or the general ageing/busy life effect.