Neurologists and Msers do not see eye to eye; why?

#MSBlog: Does your neurologist belong the 

Kremenchutzky and Walt. Perceptions of Health Status in Multiple Sclerosis Patients and Their Doctors. Can J Neurol Sci. 2013 Mar ;40:210-218.

Objective: To compare neurologist and MSers perceptions of multiple sclerosis (MS)-related health status.

Methods: MSers (n=99) were recruited from six sites in Canada. Following a consultation with their neurologist, MSers estimated their relapse frequency, rated their general health and quality of life (QoL), reviewed descriptions of eight health domains and selected the three most important, and completed a utility assessment using the standard gamble (SG). Concurrently, neurologists independently used the same instruments to rate their MSers’ health status. Assessments were compared on the basis of paired mean values of both groups and the degree of exact agreement quantified by intraclass coefficient (ICC) and kappa analyses, which yield values of 1.0 with 100% agreement.

Results: There were significant differences (p<0.001) between MSers and neurologist ratings for relapses in the last year (0.86 vs. 0.4, respectively), QoL (61.2 vs. 69.7 (maximum score = 100) and utility (0.864 vs. 0.971); ICC analysis revealed moderate to poor levels of agreement (0.56 for QoL to 0.03 for SG). There was little concordance in identification of important health domain and the only significant associations were in bodily pain and social functioning (kappa statistic = 0.24, p = 0.026 for both). Neurologists identified physical functioning domains as important, while MSers placed more emphasis on mental health domains. 

Conclusions: Discrepancies between neurologist and MSer perceptions of MS were observed. The study identifies a need to educate neurologists on the recognition of MS health domains that are important in the definition of MSer QoL.

“Are you surprised by the results of this study? I am not! Almost every bit of research shows a disconnect between what MSers and neurologists think and expect. This applies to the assessment of risk as well; neurologists are much more risk adverse than MSers when making decisions about DMTs and treatment strategies. When will this change? May be in the next generation! May be neurologists should all join;

“I created, a hypothetical organisation, to make a point in relation to concordance in a lecture I gave at the European Charcot Foundation meeting in Lisbon back in 2005. I was promoting the concept of MSer choice with regard to DMTs. I recall being verbally attacked by many neurologists in the audience at that meeting for suggesting MSers had enough knowledge to make decisions regarding their treatment. Things have clearly moved on a lot since then, but this study shows things need to move a lot further.”

8 thoughts on “Neurologists and Msers do not see eye to eye; why?”

  1. I know we used MS decisions when my son was diagnosed. Hard copy booklets produced by the drug companies tell you how wonderful their drugs are. Cassettes and VHS videos- not many have the equipment to play them now. Books are out of date almost as soon as printed, and can be quite scarey if they are basing their predictions of outcomes on old data. The internet has become a real educator, and as DMTs have come on in the last 10 years, so has internet use. Neurologists may say beware, you get a load of snake oil peddlers and crackpots, but you also get up to the minute research, clinical trials and drugs about to be released, which you would probably not find out from normal channels. Perhaps neurologists feel trapped when MSers talk about treatments they can't prescribe. An educated MSer must be a frightening thing to a lot of old school neurologists

    1. Yes, I can second many of the points raised by Anon. I feel that neurologists (who are not MS specialists but general neuros) feel a bit threatened by an educated and well-informed MS-er who often knows all the latest MS-research news and trials while the neuro does not. Also there is the old power game at play of doctor versus patient (and often male doctor versus a young female patient) so I feel neuros often interpret it as impertinence to be told by an MS-er to do what they are told! The second thing is definately the cold truth that there is no effective treatment for MS-ers (progressive) and the diagnosis/symptoms are hard to analyse but neuors hate to admit that! Doctors often have links with pharma and want to offer you the out-dated treatment because they want to finance their GPs office and MS nurses (at least in my country) or they are doing trials of XYZ and don't want to hear about any other drugs an MS-er might suggest.

    2. The sexism is real. My current neuro is okay, but the last one was so patronizing (taking over for a young woman who left his practice) that I saw him once before bailing.

  2. I agree with the comments above. There is almost a mystique about having a chronic condition like MS which makes other people treat you as 'different'. But if you'd broken your leg, people wouldn't assume you'd also lost your decision-making ability, would they?But there is also something about being put in a box labelled 'MS' and assumptions made about you and your capabilities (which I strongly dislike). We are still people with abilities and opinions unique to us. Apologies as I realise I am not making myself clear but time constraints mean I can't find the exact words to put my point across.Maybe it's simpler to say yes, Prof G, agreed 🙂

  3. Because they just don`t listen!I go to my neurologist or a MS-Center and even try to explain symptoms the best I can. I even think of models they can do for themself to feel the symptoms, like e.g. putting their hands into a bowl of ice to experience the feel of irritation in the hands and feet.I do that because I always had a big interest in science and was deeply involved into scientific research when I was employed.And you know what?Fuck them!I go visit them, get my infusions, and let them run around in circles.Some famous medical pioneer once said something like "you should listen to every patient to learn something about a disease".Seems this has gone out of mind.

  4. Is it surprising that neurologists rate (some)) physical symptoms above other QoL factors when MS'ers status is ranked according to EDSS which focuses even more narrowly only mobility, especially at the upper end of the ranking. It completely ignores further changes to visual impairment, sensory and cognitive problems. I have had hand impairments which have a massive impact on my life but it ranks low as an EDSS score.My (MS specialist) neurologist, who I see several times a year, never asks me about changes to any functional system – and scores my EDSS based on his observation of me getting into the consulting room. My current neurologist isn't an arrogant "I know best, patients should do what I tell them and not question me" type but I have unfortunately faced a couple in the past – but don't have a problem being assertive and getting them to treat me with respect… and then asking for another neurologist !I agree with the earlier commenter about helping neuros understand what symptoms feel like and the day to day impact on our lives.

  5. In the UK, there is a strange dichotomy. Patients are encouraged (or were) to take the Expert Patient Course. You are encouraged to manage your own disease. This level of self-management doesn't always go down so well with neurologists. The MS nurses seem very happy to encourage self-management. I know that numbness in a part of my face is related to stress and will be gone in a couple of hours. I don't get worried about that, but try deal with the underlying problem. MS-related or not. I was diagnosed in Singapore in 2000 and my neuro would answer panicky phone calls night or day. It was with-knobs-on private health insurance. However, I was on my own in south-east Asia. There weren't any other MS patients. When we moved back to the UK, I met my new neurologist and he was okay. He refused to test for NABs and refused steroids. He became confused between Modafinal and Amantadine and Amitripityline in one nightmare-ish consultation, but the MS nurse was marvellous. Any serious MS issues were left to the nurse. He'd actually listen to patients and respected the fact that I am educated and knowledgeable about MS. Now, I live in Northwest Spain and my neurologist is delightful. I know when his office consulting hours finish and if I'm having problems, I can see him then. He apologises for his English and I apologise for my Castellano and we get by very well, educating each other. He isn't an MS specialist, but he cares and if he wants to know something, he'll ask. He knows how I live, what I do to stay mobile and that what I eat matters to me and jokes that the Rebismart is too complicated for him!

  6. After a recent consultation with a neurologist I am considering stopping Copaxone to avoid having stressful conversations with neuros who, for whatever reason, are too fixed on their own ideas/agendas to take in what I am saying about my experience of being in this body. Perhaps it is more convenient to brush new symptoms aside as MRI's are expensive and any notion of the DMT not working is inconvenient when management profit from the makers. When new symptoms/relapses are dismissed as being due to weight, when clearly that is not the case, you have to ask what is going on. Having symptoms dismissed by a neuro is not new to me, but my goodness I have reached the end of my tether with it. I don't need the extra stress, something has to go, unfortunatley it's not going to be the ms.

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