Thursday, 27 April 2017

#ClinicSpeak & #AAN2017: cognition and MS

Is it not time to start measuring cognition in routine clinical practice? #ClinicSpeak #AAN2017

As promised to several people who have come up to me at the AAN; the following are my slides from the satellite symposium on MS and cognition. In my talk, and slides, I make a strong case for measuring cognition in routine clinical practice. If you don't measure and monitor it how can you address it in clinical practice? 


To help I have also asked Biogen to make available their iPad based Processing Speed Test (PST), which is a 2 minute version of the SDMT (single digit modality test), which is rapidly becoming the mainstay of cognitive testing in MS. This could be the game changer we need. 

One commentator made the point that if you measure cognition and its getting worse what can you do about it? Several things; firstly you can assess whether or not it is related to MS disease activity, which may require starting or switching therapy. Secondly, it may be related to some reversible factor, for example a concomitant medications that affects cognition, e.g. anti-cholinergics, or even a cognitive relapse. Thirdly, if you do detect worsening cognition you can also counsel patients and offer them help, for example cognitive rehabilitation. People with MS who have worsening cognition may factor in this information into certain life choices, for example, whether or not to register for a particular educational course or not to apply for a specific job. Some patients may use the knowledge to change their work and life status. 

I also made the point that why should we treat cognition differently to other MS outcomes, for example the EDSS and walking speed. PwMS know that they are physically deteriorating, why shouldn't they have the option of knowing that their cognition is deteriorating? To make the latter point an Italian colleague of mine sent me the following quotes:

'Omnia metire quaecumque licet et immensa ad mensuram tempestive redige' or 'measure what is measurable and render measurable what is not', which has been attributed to Galileo. The phrase is the motto of Franz Halberg, the father of modern Chronobiology and sounds very similar to Lord Kelvin’s: 'When you can measure what you are speaking about, and express it in numbers, you know something about it, when you cannot express it in numbers, your knowledge is of a meagre and unsatisfactory kind; it may be the beginning of knowledge, but you have scarcely, in your thoughts advanced to the stage of science'


CoI: multiple

14 comments:

  1. I reject your position statement to a large extent. Yes, test if related to something specific such as the potential need to switch DMTs but not routinely, and most especially not if there's little or nothing can can be offered.
    I spoke to my neurologist about this after recent posts on this site. She supported my perspective in telling me that she can refer for assessment if, for example, she's concerned about a PwMS memory, but then there's nothing she can offer them. She said they've had a focus on cognition in the past and a mental health nurse was appointed , but this position was then withdrawn. She also endorsed my saying that I don't want to know my faculties are trickling away year-on-year, anymore than anyone would due to the aging process! I'd rather come at it the other way - neuro plasticity and neuro genesis are encouraging and I for one, would rather do what I can to facilitate my cognitive functioning!
    As the Bart's team is aware: the psychological impact of this disease is huge and I would argue any intervention has to guarantee, as far as is humanly possible, a positive outcome for the PwMS to go away and live with. As my neurologist clearly illustrates this isn't possible, at least here in the UK, when she said '"I've a bit of paper with an assessment on it, the Patient has a bit of paper too and that's it!"
    With this viewpoint I am encouraged by the work proposed by Prof Langdon that I believe will focus on resources for PwMS experiencing cognitive difficulties.

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    1. Cognition can get worse because of the drivers that make mobility worse. It may be a sign your DMT is not working well enough and if so there may be things that can be done.

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    2. Dropping the DMT improved many things including cognition. Before that I wasn't well enough to even think about looking for a new job.

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  2. I am not convinced this is measurable effectively.

    If the monitoring is not thought out very carefully it could be a disservice to pwms. My difficulties fluctuate in different circumstances. I am trying to pluck up the courage to apply for a job I know I am capable of but I also know that the nerves of the first couple of months will cause terrible headaches, brain fog, forgetfullnes and fatigue. My mind goes blank when I try to absorb something new and have to take it very slowly and return to it a few times. Learning a new job will make me unwell, then it will settle into just the usual daily annoyances of forgetfullness and concentration issues which come and go depending on what I am doing and where I am.

    Looking at what could be done about the issue would be more helpful. (I did a quick search for Prof Langdon after reading the above comment and got a page of Tom Hanks links! :-) )

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    1. Hi Julie Prof Langdon did a guestpost in March and I was taken with what she is aiming to do so have volunteered to contribute.
      Whilst I support ProfG in trying to have MS recognised as a form of dementia and his raising the profile of cognitive impairment I'm not convinced there's anything like the support and resources PwMS need available so that's why I'm doing what I can for myself as well as having signed up with Prof Langdon.
      In case you're interested I go online and do things such as verbal memory and concentration tests, and visual memory tests. I've also taken a look at executive function tests so as to be confident of my abilities in undertaking them. This is in addition to the usual brain training, also mindfulness, diet and physical exercise.
      I don't wanna sound like I'm focussed on this all the time because that isn't the case. I do try and do some things fairly regularly but it's all quite haphazard the majority of the time, and depends on my mood and energy levels!
      Hope you enjoy ProfL guest post.

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    2. Thank you for your reply Fi. I will look online for the tests you mention they sound useful.
      My efforts are haphazard too, usually because I forget what I am supposed to be doing!

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  3. This post raises several issues:

    1. About a third of pwMS don't want to self-monitor; so doing regular cognition screens is not for everyone. This is about choice.

    2. Cognitive impairment, is not a oneway street. Many pwMS have cognitive relapses and see their cognition improve. Please see previous post on this topic: http://multiple-sclerosis-research.blogspot.com/2013/03/poll-results-cognitive-relapses.html

    3. Knowing that you have cognitive impairment allows you to address the issue. Most people with cognitive fatigue have cognitive impairment or they may be depressed. These are things that need to be identified and managed.

    4. The ostrich syndrome invariably fails; not seeing the hunter doesn't protect you from being shot.

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    1. There is, of course, a right not to know.

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    2. 1. I had/have to self-monitor along with my fiance'. No other options exist. Cognition is complex, simple monitoring protocols to map the complex may be difficult as "cognition" is a broadband term.

      2. Exactly. Mine can wax and wane given a variety of circumstances as would other patients. Stress, heat, etc... Other emotional conditions such as bi-polar for example.

      3. I agree completely. Cognition and executive function fail to be addressed there is just nothing good and all bad going to result from this. It needs to be addressed for both QOL and long term outcomes.

      4. Running away does but that doesnt stop the hunter from hunting. Not addressing cognitive/executive function decline in BOTH clinical and self-care is "running away"

      Too many MS patients accept, "This is my new normal"

      While medically, no magic pill exists there are OH SO MANY cognitive therapies both professional and self-managed patients can do. But if that starts as "This is my new normal" one has placed a barrier directly in front of them.

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    3. Of additional note, this could be an area where technology could really shine.

      Performing cognitive tests at clinical visit intervals, 6 months? a Year? IMHO thats a BIG problem. Again, hard to address such matters when patients accept or do not even realize, "I am at a new normal"

      Addressing this through technology, self-input, can yield results and BIG DATA that can THEN be used to not only pin down head counts, put also facets (categorization) of deficits. Can have broader application as well, memory short/long term for example.

      We both know matters of proper brain function are a ENORMOUS unmet need among many unmet needs in MS. At the very least, such gathering of Big Data will prove that. Thats a large step towards moving clinical to begin really addressing it.

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  4. We are all different and assessment, monitoring and treatment should allow for that.
    I would want to know and would make life choices on that basis. I suspect I might be getting a bit knocked off but am pretty sharp on a lot of things and testing may help put this in perspective.
    I remain upset that there was a long delay in my diagnosis as I would have made different choices in life and would also have been less hard on myself and would have understood why I had problems. I want to know what is happening with my mind and body whether it can be treated or not and would welcome objective measuring but other pwMS must have the right not to know.

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  5. Whatever the monitoring (and I would appreciate it) it has to compare individuals against themselves. I know my brain is not working as well as it used to - e.g. Regularly getting wrong words for things, I was referred for possible group therapy, but I didn't pass the screening required to get the treatment as I wasn't severely enough cognitively impaired due to my ability with numbers. As a Cambridge Mathematician who volunteers to assist with primary school maths, it is hardly suprising my ability to add single digit numbers was apparently 'better than the person assessing me', and excluded me from support.

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  6. Hi can feel cognition slipping away all the time. I can barely walk and talk. I certainly cannot drive. My concentration is like that of a comedy 85 year old. Yes dear, what was that again?

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