Podcast:
The following are my slides and the accompanying script. What are your thoughts on the issue?
ProfG
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Does Barts-MS provide routine screening?
not at all.
Not routinely at the moment. We are in the process of validating the iPad BICAMS battery and hope to implement the web-based PST (processing speed test) as part of our ClinicSpeak suite of apps. We do full neuropsychometry on a case-by-case basis.
MS cognitive assessment should be as routine and on-going as it is for any other MS physical symptoms, nothing less. Perhaps, it may cease when there is a restorative cure for MS. Anything short of that is malpractice and should send the PWMS off to receive a second [informed] opinion.
so what do you do if you are taking Tysabri and loosing brain volume?
Provided that are are NEDA-2 (no relapse and MRI activity) we simply watch them or refer them for potential add-on studies. We have a few patients on the PROXIMUS trial who on natalizumab. These patients had to have raised CSF neurofilament levels to be eligible for randomisation.
the lumbar puncture trial with a 50% chance of getting nothing out of it (placebo) and 50% a drug with unknown side effects?
The risk with app-based tracking is privacy. I wouldn't want my employer to know that my cognition was declining. I wouldn't want my health insurance company to use the data to decide which drugs to cover based on perceived efficacy.
I've taken the processing speed test and the one where you are slowly read a list of numbers and you add up the previous 2 numbers to get the sum. Couldn't these be performed online for self monitor purposes?
I personally don't understand why it isn't monitored. To me it is the single most important thing. My career depended on it, but unfortunately no more career… I recently did the SDMT as part of a trile for depression and the test only took 2 minutes. For a disease of the brain you would think it was the top priority to test!
As there is currently no treatment for me, having PPMS, I think it would not help me or my neurologist to have evidence that my cognitive impairment is increasing. I have a healthy diet, read a lot, do sudoku and do physical exercise so I feel that I am currently doing all I can to maintain my cognition. If, however, treatments were available then I would be very much in favour of monitoring my cognition.
Is cognitive measurement reliable? Given that when the patients take high efficacy drugs the cognitive functions improve very fast (with Tysabri, Ocrevus and HSCT, I guess with clad too) it is a good way to measure inflammation in the brain but is it for real cognitive damage also?EDSS can improve with these drugs too but not in the same way. I had this question myself about the reliability of cognitive tests.
To deploy my point a little, because it might answer to the worries of members here, after HSCT people with progressive forms that had a high EDSS and many years in the disease, the two instant improvements they notice after the treatment -and sometimes these are the only ones- is that the brain fog is gone (and they have better cognitive function and memory) and the fatigue is much less. So even in a brain that has a severe atrophy there is still place for cognitive improvement. MS dementia is not Alzheimers. What you see is not what it is.
I don't agree no. Until its treatable I think it would do more harm than good.
So, at the risk of seeming like a broken record, I repeat my case for a smart phone based measurement of cognitive impairment.The App would track the uses that a pwMS makes of their SmartPhone. The end result would be a 0-9 score on the SPUI (Smart Phone Usage Index) with 0 being Dumb Phone only ranging upwards to a multi purposed use. Somewhere toward the lo end of the scale would be making phone calls, followed perhaps by taking pictures….I take it that you get my drift. The point is that it's eminently "writeable"
I know my cognition varies at different times of the day, also other factors like if I've just eaten, or have been exercising make an impact. My fatigue hits mid afternoon some days, other days in the morning, other days no fatigue. Would it be best for me to have tests in the morning? I don't know.
Sorry Dr. G, I completely disagree with routine cognitive testing for non medical reasons that you do not seem to appreciate. Do you think someone with MS could get a job, a driver's licence, any kind of insurance, a bank loan or even a library card when you have pre-existing cognitive decline? Sorry, but until it was completely confidential, which it is not, this should be thought out very carefully before implementing as you will limit an already opportunity limited MS patient base, even though you mean well. Insurance companies can access any patient's files with their "voluntary" informed consent when applying for loans, insurance, etc. Physicians will be forced to remove patient's driver's licenses because of diagnosed cognitive decline or force them to be flagged to do a driver's exam for cognitive impairment.
Is this the ostrich syndrome? Why is cognition any different to physical impairments or disability? They are one and the same. What I am proposing is voluntary and individuals can opt out.
I am not saying it is right not to measure cognition routinely medically. However, I know for a fact that if you label someone as "cognitively impaired" or "demented" then it carries disastrous consequences to their lives with loss of future insurance coverage, access to bank loans, access to employment opportunities and removal of driver's licenses. You are correct that cognitive monitoring is wrong to ignore but this is reality of the current world we live in. If someone applies for insurance, the insurance co. forces the patient to sign a consent for the GP or specialist to release the complete chart notes. Also, if a GP has a patient labelled as cognitively impaired through the neurologist, they have an obligation to report this to the motor vehicle authority. On the other hands, if somehow complete confidentiality could be guaranteed, I am sure most MS patients would volunteer to routine cognitive testing and monitoring.
In the UK it is a legal requirement to inform the DVLA of a diagnosis of MS anyway. With medical support, a temporary licence is issued which must be periodically reviewed.
It looks as if the issue of routine cognitive testing is a marmite issue; I you either lover the idea or or hate it.
So where does all this leave you GG? PS I love marmite. My sister brings me 500gm jars every time she comes out
I'm terrified of losing cognition, and I'm also hugely frustrated about the lack of information on prognosis. I also only get ten minutes of consultant time every two years. If I had a well validated method of self monitoring, particularly in such a discrete area, I would feel better informed about my condition and better equipped to have conversations with the people who look after me about how I'm doing. As a consequence, I'd worry less.
If challenging your own mindset is of benefit in terms of cognitive functioning then I've done mine a big favour listening to the rationale you put forward for routine cognitive testing ProfG.It has been of benefit, as my position status is not so rigid now: the correlation with deciding on which treatment options, for example. What remains an anathema to me is the idea of routine testing, so different to testing for specific reasons and linked to easily defined potential benefits. It is apparent, from your Talk, that there are occasions when this is the case, and in such circumstances I will now be open to testing. However, cognitive functioning is so interlinked with other pertinent factors such as depression or social isolation that solely a clinical focus is, in my view, limited in what it can positively achieve. Add to this the anxieties expressed by others concerning the potentially negative impacts on employment etc and I'm persuaded that the 'benefit/risk ratio' rules out routine testing. I respect the Bart's team for focussing so strongly on widening the all too narrow focus on MS as a disease of the lower limbs. Clearly, as well as hand function, areas such as cognition should be flagged up as requiring greater attention and PwMS should be made more aware so they can flag up with their medical team and be confident of a receptive and supportive response.Persuading folks to focus on their mental, as well as their physical health, may possibly be more of an easy sell, and potentially of greater benefit in the immediate and longer term.Thanks though for the personal benefit to me in having helped expand and refine my thinking ('cuse the pun) on cognitive testing.
Is there already an option of online selfmonitoring? Or is every decent test unavailable to the public, copyrighted and expensive?
I am conflicted about this. I completely agree with Nissan Grifter about the major potential downsides for PwMS from employers, insurance companies, driving regulators etc. However I also think it is important to track changes in all MS symptoms so that appropriate treatment / support can be accessed. I don't think that there is currently enough information and support for cognitive symptoms from either clinical practitioners or MS charities. Whenever I mention a worsening of my memory, concentration or ability to take on new information to my MS team it is noted but very little evidence-based advice on managing the symptoms or slowing the decline is given. I am fortunate to have a fair bit of cognitive reserve but I really notice the changes and it scares me.Separately, I am a participant in the Kings College London PROTECT study. It is a 10 year study to track cognitive changes in people over 50 to understand the ageing brain and why people develop dementia. The participant, family member and GP all contribute to the study. I complete a barrage of online cognitive assessments annually (you repeat the tests three times in a week and the researchers calculate the average) and I update my medical and lifestyle information.The tests measure Memory, Perception, Attention, Problem-Solving and Language and take around 35 minutes to complete.Rather than re-inventing the wheel in devising cognitive assessments for PwMS it would seem sensible to use tests such as those above.And like David Stratton I am a marmite lover…
There is no use in measuring disaster,it will not improve anything. You know there is atrophy in MS,don't measure it – stop MS. There is too much effort and money in adapting world to MS,instead of eradicating MS itself. Untill Doctors(Health Workers) start to speak loudly and change their point of view about importance of air,water and food contamination,diet and lifestyle(please imagine abundancy of molecular signalling pathways behind these terms) – as the main cause of MS and many other diseases,and influence bigger eco-social changes,MS remains never-ending story. People, we have epidemics of MS. Suddenly EBV become Avenger?
Actually I don't even think it as black and white as marmite (which I love).I am also not sure that the ostrich analogy is helpful either.Being monitored would be really interesting and helpful both for knowing what is happening to my body but also because it might affect treatment.However I am horrified at the idea that information about my mental decline could be shared with the world. There is no confidentiality in the NHS really and it could affect employment (by prejudice of employers, rather than based on performance), driving, insurance cover etc as Nissan Grifter has pointed out. Having cognitive decline is one thing, being 'labelled' as 'cognitively impaired' is quite anotherMy cognition, intellect and emotions are the essence of who I am and I am not prepared to share such fundamental information freely.I really fear cognitive decline and do some 'self monitoring' with on-line mind training puzzles (not sure if they work), Sudoku, learning another language and also eating a good diet, regular exercise, meditation practice etc. So I don't think this is being an ostrich. Monitoring of hand and leg function is not the same as monitoring cognition, those functions are just part of who I am. Monitoring my cognition is monitoring my being and I do not want that information to be freely available.
I would suggest that the Smart Phone test – private to you – be something that matches other forms of self monitoring. You, the pwMS, would then have the choice of whether to share.As Annonie Mouse notes below there are really two arguments getting interwoven here. Metrication is key to DMT prescription, trial participation and research generally. At the same time that metrication can have "real world" consequences – some bad such as job prospects or insurance premiums and some good such as the driving story.There is no "right answer" to this – just the constant re-assertion of free will
Re: comments about driving Surely it's good to be warned about cognitive deterioration in advance? Can you keep up the sustained mental concentration necessary to drive? Are you sure? Wouldn't it be better if there was a way to measure/estimate this? Why so different to being asked how far you can walk? Agree with ProfG re ostrich mentality.Perhaps if I'd completed a processing speed test at clinic I'd have been forewarned to give up driving before I nearly killed my son, myself and the driver of an oncoming car. I was 44. Ps I love marmite 🙂