Saturday, 18 February 2017

#ResearchSpeak: when best practice clinical guidelines our out of date

Is your neurologist a sheep or a wolf, a herder or an independent thinker? #ResearchSpeak #MSBlog

The following study looks at decision-making by neurologists in relation to a simple case scenario. The researchers come to the conclusion that neurologists display herd behaviour, i.e. they follow the crowd rather deciding independently. The study is based on a simple case scenario of a 40-year-old woman with MS who has been stable for 3 years on subcutaneous interferon and developed a self-limited neurological event. I assume this was a relapse. There were no new magnetic resonance imaging (MRI) lesions. Her neurological examination and disability scores were unchanged. She was advised by her MS neurologist to switch from interferon to fingolimod against best practice guidelines

What this scenario doesn't explore is that we all know the EDSS is not fit for purpose and the fact that it was unchanged is neither here nor there. You can still have a relapse despite an unchanged EDSS. Similarly, the there were no new lesions on the MRI. The scenario doesn't mention whether or not a spinal cord MRI was done. May her relapse due to a spinal cord lesion. The researchers assume that if the MRI shows no new lesions then this person has not had a relapse. A significant number of relapses occur without new MRI lesions. The MRI only detects lesions that are ~4mm in size or larger. A small lesion in a critical area can cause a relapse without being detected on MRI.  They also assume that the MRI and EDSS are the disease, when in fact they are not the disease. The disease is biological and hence needs to be thought of as a biological process. They also assume the 'best practice clinical guidelines' are set in stone and to be obeyed at all costs and are current and up-to-date.  Most guidelines take so long to produce and get consensus that when the come out they are usually out-of-date. Guidelines are usually reached by consensus and hence are typically behind the adoption curve and not at the vanguard of new treatment paradigms.  

I assume that the neurologist who read this scenario interpreted the 'self-limited neurological event' as a relapse and advised the patient be switched to a more effective treatment. Unless these investigators can provide evidence that this was not a relapse how can the expect the neurologists they surveyed not to switch treatments? In an era of treat-2-target of NEDA it is clear that the 'best practice clinical guidelines' our out of date. In my opinion this study shows that the neurologists who applied the 'best practice clinical guidelines' were the herders, blindly following guidelines and the ones that elected to switch treatment were the independent thinkers, acting in their patient's best interests. My conclusion on reading this paper is the exact opposite to the researchers' conclusions. 

What do you think? 


Saposnik et al. Herding: a new phenomenon affecting medical decision-making in multiple sclerosis care? Lessons learned from DIScUTIR MS. Patient Prefer Adherence. 2017 Jan 31;11:175-180. doi: 10.2147/PPA.S124192. eCollection 2017.

PURPOSE: Herding is a phenomenon by which individuals follow the behavior of others rather than deciding independently on the basis of their own private information. A herding-like phenomenon can occur in multiple sclerosis (MS) when a neurologist follows a therapeutic recommendation by a colleague even though it is not supported by best practice clinical guidelines. Limited information is currently available on the role of herding in medical care. The objective of this study was to determine the prevalence (and its associated factors) of herding in the management of MS.


METHODS: We conducted a study among neurologists with expertise in MS care throughout Spain. Participants answered questions regarding the management of 20 case scenarios commonly encountered in clinical practice and completed 3 surveys and 4 experimental paradigms based on behavioral economics. The herding experiment consisted of a case scenario of a 40-year-old woman who has been stable for 3 years on subcutaneous interferon and developed a self-limited neurological event. There were no new magnetic resonance imaging (MRI) lesions. Her neurological examination and disability scores were unchanged. She was advised by an MS neurologist to switch from interferon to fingolimod against best practice guidelines. Multivariable logistic regression analysis was conducted to evaluate factors associated with herding.

RESULTS: Out of 161 neurologists who were invited to participate, 96 completed the study (response rate: 60%). Herding was present in 75 (78.1%), having a similar prevalence in MS experts and general neurologists (68.8% vs 82.8%; P=0.12). In multivariate analyses, the number of MS patients seen per week was positively associated with herding (odds ratio [OR] 1.08, 95% CI 1.01-1.14). Conversely, physician's age, gender, years of practice, setting of practice, or risk preferences were not associated with herding.

CONCLUSION: Herding was a common phenomenon affecting nearly 8 out of 10 neurologists caring for MS patients. Herding may affect medical decisions and lead to poorer outcomes in the management of MS.

CoI: multiple

17 comments:

  1. Super post. Great to highlight this.
    I feel my vision has started playing up since Christmas. My mri is unchanged apparently. I'm anxious that this means my treatment isn't working as desired. My vision issues are subtle and hard to describe but there is something there. In bright light I have blind spots when I move my eyes from one thing to another. It's as if my eyes take longer to stabilise or something and refocus on the new object or whatever I'm viewing. I often find it very hard to describe these subtleties to doctors. It bugs me. I even start questioning myself. Is it really there? Some ms issues are just not black and white in the early stages.
    I'm constantly pondering when I have a free moment whether or not I need to change my dmt or not... any advice? Ps I had the eye test done at hospital last week where you stare at the screen and it changes black and white squares while you look centre the whole time. However this will only confirm if I have ever had optic neuritis and not whether I'm having it at present. Hmmm. Any other tests I can do to see current issues with vision?

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    1. I am sure what you are experiencing is real and of course it is difficult to describe it to your neuro - if you try the neuro may even doubt it as neuros only know what they have learned or have experience themselves. Nobody would question double vision or blurred vision in MS,but the problems can be more subtle - like problems fixing on an object or following a moving object, or following a stationary object when moving your head etc. I have had optic neuritis and diplopia and now I have some funny image jumping - like the axis of an object moves when I am holding it in my hand even though my hand does not move. I have seen an opthalmologist and my neurologist, both just shrugged their shoulders.

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  2. I think my neuro is a herder, but is seen by others in the MS community as an independent thinker.

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    1. I know a neuro who reckons he is number 1 neuro for MS in Australia lol... His nurse even tells his patients that ;)

      Ps. I'm the number in everything in Australia :D

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  3. Thank you, so much. My neuro convinced me that tecfidera would b more effective than interferon beta. I hate it. I feel so ill, that I want to stop, for the second time. Back to good old beta interferon for me. No more exhaustion, or odd colored pee,h or severe gastric pain.

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    1. The question is why change from good old BI but if the reason it was not working there are alternatives to teciferda.

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    2. This only my opinion, but I think that if & when they become available, ocrelizumab &/or oral cladribine will be attractive options when considering safety, tolerability & effectiveness, compared to what's available now. I really hated the side effects of betaseron for the 2 months that I took it.

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    3. I had a knee replacement and this triggered a period of activity, that affected my bladder and memory. I had 2 new lesions and one on my spine. I need to have enough energy to play, as I am a musician. I have decided to accept the risk of coping with recovery from a bad summer, last year and get me back, not the exhausted zombie, that I am at the moment. I'll plead my case tomorrow.

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  4. The edss is most definitely not fit for purpose. One of my friends recently went from 7 (using a wheelchair but up and about most of the day) to 10 (dead from the effects of MS) quite recently. Well he died from a hospital acquired lung infection after being hospitalised because of a UTI - I don't know what was the recorded cause of death. Bladder problems were one of his MS issues not recorded on the edss. Do the doctors at Barts think there is any chance of the medical community adopting a revised edss?
    I think it would take me a week or so to compose a revised edss that caught most of the things that go wrong with people's bodies in MS and gave them a score that took other things into account besides walking. Is it worth doing?

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  5. As a patient you always can influence the choice of your treatment, not only in MS but in general. I won't stop repeating that if you are not satisfied with your treatment is your right to ask for a change and have a discussion with your doctor so he can put your opinion into consideration, and if you are still not satisfied, there's many neuros.

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    1. But not every patient is aware of this. Especially in the beginning when first diagnosed. The patient may not have had much experience of being a healthcare consumer. Or they may not have the capacity cognitively if very unwell.
      It takes time to build knowledge of how the NHS works. Unless you are fortunate enough to work in healthcare or have family/ friends that do and know how the healthcare system works.

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    2. Agree, however second opinions are not a given right. You have the right to ask for one, whether that's granted or not relies on your neuro / GP agreeing to refer you elsewhere. This can present difficulties.

      Plus, how does one pick a free thinker out from the herd? If only there were Google reviews about.

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    3. Pedro OrtizSaturday, February 18, 2017 10:46:00 pm
      As a patient you always can influence the choice of your treatment, not only in MS but in general. I won't stop repeating that if you are not satisfied with your treatment is your right to ask for a change and have a discussion with your doctor so he can put your opinion into consideration, and if you are still not satisfied, there's many neuros.

      I don't have MS and yet I despair at the amount of preparation, money and energy it takes to see another neuro. not to mention the 3 to 6 month waiting list (real useful when you have an emergency).

      see another neuro is SUCH easy advice to give in words.

      i dare anyone who's given that advice (me included, repeatedly) to 'just see another neuro' then evaluate the impact it's had on their life.

      look, i've 'forced' my partner to see no less than 6 'another' neuros. i suffered along with her before and at each appointment. funny thing? a friend ms, not us, found 'the' neuro. the 5 out of the 6 we saw? they made me want to pull my own eye lashes out, one by one. $1k later, i want to say we learnt something, but truth is, we've learnt far more from this blog. the $1k (after medicare) was a waste of money and time and energy.

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  6. You're absolutely right. Some neurologists think that the MRI tells the whole story. That's why my ex neurologist said I had "benign MS" . Now I am secondary progressive

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  7. "CONCLUSION: Herding was a common phenomenon affecting nearly 8 out of 10 neurologists caring for MS patients"

    I think I want that to become my new email signature... if only it wasn't for the next line (about it negatively affecting care), it would be hilarious.

    Thanks for the picture too. Depressing post but I laughed heartily.

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  8. When I was offered a change to Fingolimod from Copaxone because I had developed a new sensory symptom, what helped me decide was that the neuro said he honestly didn't know whether I should be making the change or stay with what had worked for eleven years. The fact it was clearly going to be a finely balanced decision made me really think - more deeply than I had ever done about treatments! When asked on the spot, I'd said no, but after this reflection at home I rang the hospital and said I'd changed my mind. I felt very calm and knew I'd done the right thing. Now what type of neuro behaviour is that? I don't care, just glad I see who I see!

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  9. I have to confess to being puzzled by the post which refers to two studies only one of which I could read. The Spanish herding study (60% response! Neuro's rock) establishes the behaviour exists. Surprise, surprise.

    The single case fits our - my wife's and my - experiences of neruro appointments being somewhat formulaic. The 4mm lesion figure is pretty central. The case for computerised MRI comparisons seems over-whelming and would save so much neuro time.

    The point that is missed, I think, in the herd behaviour is attending to the experts in neuro's room - the patient and their carer. The appointment for us is expensive and long-distance and often seems to add less than our GP!

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