Guest post: A patient’s point of view: choosing a DMT

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This is a four-part post, where you’ll read about the experiences of newly diagnosed MS patients, plus my observations, with links to a some of the research underpinning them. The objective is to address some hidden and often difficult-to-address issues that come up when prescribing a DMT to a newly diagnosed patient.

As a pwMS of 26y post-diagnosis in the UK, having worked in pharma, IT, consulting, a small business founder then as an old (very old!) student, I have a fair experience of life.  Rebif, Copaxone, Tecfidera and now Ocrevus: every single one has been as a result of pressure that I have put on the system. I have never been proactively engaged by the NHS and instead have had to push for everything. That has caused me to learn much more than I ever imagined.

When I was diagnosed back in the 90’s it was by a then eminent London professor. Although I had a pretty good idea by the time of the consultation he just said, “I’m afraid you have MS.” That was it. I asked him, “What do you suggest?” and he replied, “Eat less red meat.” That was it. Really. So saw about 12-15y of complete denial from me. If that was the attitude of the Doctor to my MS then mine reflected that attitude towards my diagnosis.

I have only started to engage with the wider MS community in the last 18 months; how things have changed regarding patient involvement! The intra-patient communication and support has been enabled by the leaps in communication technology.

My last 6 years of life as a student has enabled me to form a syncretic viewpoint based on some aspects of human behaviour. I’ve studied terrorist radicalisation and cults; as well as examined influences upon environmental behaviour using large scale studies and detailed multivariate regression analyses. I also have prior experience as a Bobby, and have interacted in the home environments of all sections of society.

Background

I have gone to a fair degree of effort to understand the issue from many aspects, both patient, prescriber and outsider by explicitly raising the topics in conversations.

I have formed the view that there is often too much of a ‘hands-off’ approach by doctors with their MS patients, many of whom have taken nothing stronger than Amoxicillin 250mg in their lives to date. It isn’t uncommon to hear some remark that they feel forced to make choices on DMTs, choices that ought to be better led by the prescribers. I am going to try and unpack some of the reasons behind this feeling.

It is interesting to note that doctors are just as subject to cognitive biases, particularly anchoring, as the rest of us. There is a good paper that is a 35year meta analysis in 2016 by Saposnik et al. in which they concluded that,

“Overconfidence, the anchoring effect, information and availability bias, and tolerance to risk may be associated with diagnostic inaccuracies or suboptimal management.”

The cognitive biases that drive all of our behaviours remain omnipresent. Despite some of the doctors that I have met over the years believing that they were educated out of such behaviours, being human beings these biases affect them just as much as anyone else.

Though familiar with the GMC guidelines regarding prescribing, the anecdotal reports I have heard suggest that these are often loosely or selectively adhered to.

The ‘made jointly’ guidance of the GMC  seems to be sometimes interpreted as deferring entirely to the wishes of the patient when choosing a DMT. I have heard of many cases where they, not the clinician, seem to be the final arbiter. The reasons I have been given range from ‘patient empowerment is key and their choice must be respected over anything else’ to the accepted argument of enhanced compliance if a patient feels like a participant in their care.

With MS DMT choices, such august bodies as the Association of British Neurologists guidelines (2015), as reported on MS News today say,

The ABN also stresses that every decision about appropriate treatment options, including the prescription of DMTs, should be made jointly between the patient with multiple sclerosis and their neurologist.

The MS Society supported that saying,

“We are very pleased the ABN recommends treatment with DMTs and recognises the importance of shared decision-making between neurologist and patient when deciding which route to take.”

Why then this departure from the ordinary patient/doctor prescribing relationship? For example, It is known that beta-interferon treated patients do not do as well compared to those on oral therapies treated patients in longer-term studies. How does a doctor that has this knowledge then allow the patient to make an apparently sub-optimal therapeutic choice without making some sort of intervention to explain the now undisputed fact that there are better options? Perhaps the question could be stepped back further to ask why the option of a beta-interferon is even given as a first-line choice?

Colligan et al describe an ideal  Shared Decision Making in MS as this:

“In shared decision-making, the provider informs the patient that there is a decision to be made and asks about the patient’s values and preferences to determine their treatment options.4 … The physician then has a discussion of all evidence-based treatment options that are in line with the patient’s goals, including the option not to treat, when appropriate. Subsequently, the physician partners with the patient to make a decision that is consistent with the patient’s personal situation (see Figure 1).7 … Shared decision-making has been described as the pinnacle of patient-centered care.1

To confuse the issue further the same paper also states,

“Physicians often assume that they know or can intuit their patients’ needs and wants.8 In fact, when studied, physicians are not skilled in assessing the amount and quality of the information that patients desire to make high-quality, complex medical decisions.4,8,9 In MS, research shows that patients have unmet information needs and desire more education about MS symptoms, prognosis, and management than they currently receive from their neurologists.1012 … 91% of patients preferred to make an autonomous or shared decision, as opposed to only 9% who preferred to have the physician make a decision for them.13

That 91% is a pretty big number to leave hanging unresolved regarding the involvement split. Many of the patients that I spoke to felt that there was a lack of leadership/guidance from the neurologist and they end up choosing a therapy that the neurologist knows gives a suboptimal outcome compared to the available alternatives.

The next post will look at some of the less obvious issues that surround the problems.

Dominic is 50, lives near Oxford and is married to Claire. He has a 16y old daughter, has lived in the UK since 1989 and was diagnosed with RRMS 26 years ago. He is now on his 4th DMT – Ocrelizumab – and has only just started to use a cane at times!

He has just finished a BA (Hons) History degree and an MSc – Politics with Research Methods.


About the author

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16 comments

  • Good post. I have spent a fair bit of time on the MS Society Forum over the years Again and again, the issue of choosing DMDs comes up, and it is clear that many patients feel under-supported. ‘Shared decision-making’ seems too often to manifest itself as a patient left at sea in unfamiliar waters. ‘Shared decision-making’ should not mean that the neurologist slides out of his/her essential role as expert adviser, who guides the patient through the process, giving a clear steer in the right direction when necessary. They are the experts: that is their job.

    • I expect there is bias, even unconscious bias though in a decision by a neurologist. Such as cost of the DMT, how experienced the clinic is at delivering the DMT?, staff needed and are they available, does the patient need to be a day case or stay overnight? – if so, for how long?- a night in hospital can be quite expensive for the NHS and is there a spare bed available?

      So share decision making is important.

  • What happens if your neurologists is a cowboy and really wants all of his/her patients to be treated with say alemtuzumab? What do you do then?

    • You’re talking about hypothetical situation, right? As a VAST majority of Neuros are on the other side of DMT spectrum (wait-and-see practitioners)…

    • I am not sure how one can intuit such a thing. Everyone, as in every single one?

      How does being an advocate of Alemtuzumab make someone a cowboy?

  • Great piece. Would love to hear more about your experiences to “push” for optimal treatment and what others can learn from that.,

  • Very good guest post. Thanks for sharing your thoughts.

    I respectfully disagree. A little bit of knowledge is a dangerous thing as you know. Patients are more likely to be sensitive to cognitive bias (survivor-ship bias) than doctors in my view.

    I do multi-variate work for a living as well, and my 10-year experience with MS taught me few other things:

    1) Seek out a specialist MS doctor who is an optimiser at heart. She must understand the risk curve in full and position the patient adequately after stratifying their risk tolerance (to her benefit in litigious society like the UK or the US, less so in other places).
    2) Patients tend to fall in 2 distinct groups: Maximum efficiency (“MaxEffs”) and the wait and see crowd (“Sleepers”). An optimiser would automatically put a MaxEff on the highest efficacy drug regardless of downside and establish a de-risking protocol agreeable with the patient. An optimiser MSologist is a risk manager in that case, rather that an optimist. (Sleepers are another ball game that we will leave on the side for now)
    3) MaxEffs need to understand that a high efficacy drug does not come for free. A bit of hypochondria is a useful trait in this group. A compelling case in point was reported just a few days ago: https://rdcu.be/bu01Z
    4) Anchoring can be hedged by having more than 1 advisor (i.e. consultant), in the absence of perfect information. A common practice in the US and less so in the UK.
    5) All patients should avoid double-blinded clinical trial where the benchmark is not the the most efficacious drug, regardless of their doctor’s advice or COI disclosure. Patients may participate in observational studies if and only if the researchers contractually agree to disclose the patients data directly back to the patient (otherwise why bother really?)
    6) Most controversial one here, I apologist in advance: Patient must avoid listening to specialist MS Nurses. I heard all kind of wrong statements and assertions from this group over the years who hold some authority and reverence with some patients.
    7) Patient should curb their enthusiasm. HSCT in Mexico and Russia is a bad idea – full stop.

    To conclude: Being an expert patient is expertise in methodolgy/process, advisor selection and self-monitoring. But advice ought to come from the highly trained professional (optimiser) without any influence from a wikipedia article.

    Thanks again for your thoughts,

    Tony

    • Great comments. This is part 1 of 4 (coming out weekly) and I think you’ll find some things to agree with.

      I like your Maxeff/Sleeper explanation. How would you suggest a newly diagnosed pwMS (3 out of every 4 are female and most likely to be 20-25y) go about seeking an Optimiser?

      Recent article (can’t remember where) highlighting that males far less risk averse (maxeff) than females. Raises Q about who gets most efficacious treatments.

      Sadly you’ll never take patient sourced ‘wikiknowledge’ out of the game. See next 2 articles…

      • Look, this is a challenging path and we are all different. I can only care about my self (sorry everyone). I have no interest in “helping”, let alone “advising” others on how to proceed. I leave this to the guys getting paid a fair amount of cash to do so.

        As for finding an optimiser – I lean on the financial industry for reference. This is an industry dealing with information asymmetry and risk/reward optimisation for a living.
        Peter Lynch, a famed investor from the 80s wrote years ago: “I always ended these discussions by asking: which of your competitors do you respect the most?”
        You can start with that. Peer recognition is a powerful thing. Asking a specialist who they look up to is a good place to start.

        Tony

      • As for wikiknowledge: It is what it is.
        I am already questioning my own preliminary understanding of HSCT, as of March 12, 2019 at 8:48 am.

        My comments are found here: https://multiple-sclerosis-research.org/2019/03/1st-line-hsct/

        Hence why I am convinced that advisor selection trumps wikiknowledge and should be your single best advice really. We do it with all other industries (pluming, car repair, etc…). Why not with Neurologists?

    • I have to say that listening to consultants as the only source of information is a dangerous game to play. It means relying on their CPD being current, their own sensibilities regarding risk/benefit as well as any particular habits, preferences and affinities they have established over the course of their career. It is extremely difficult to change consultants in the UK. I know, I tried.

      However, as it stands there are so many restrictions, rules and prejudices, that all patients should be researching for themselves. I don’t believe for a moment that patients’ research is based on Wikipedia!

      If our own consultants provided full and accurate information and the nhs allowed the neuro and patient to make an informed decision together, there would be no demand for private treatment. The reason people seek treatment abroad (myself included) is because the nhs just leaves us to rot. I want to live, not descend into palliative care and dependency in very short order.

      Sadly it’s not an ideal world and therefore we have to work with what we have, whilst trying to push boundaries wherever possible.

  • Why is it that so little is heard from patients who have been disappointed in their treatment outcome following side effects?

  • Hahaha
    White people problems again
    You can have anything you want where I live as long as you pay in cash of course, more expensive options preferred
    So the visit to my neuro is not alike a visit to a car diler

    • Why would you suggest that there is a racial bias? In the next few parts the gender difference will become clear.

      This is written about patient experience in the NHS. I can’t remark on neurological auto traders 😉

  • It’s a lot more difficult when you live in such a very remote area as I do – not saying where – and your MS is not relapsing, has a relatively rare course. But you can’t cover, have experience of everything.

  • The problem seems to be in the prediction of the path that the MS takes.i did really well for 16 years on Rebif until I had a bad relapse. It was a risk as my job made me prone to attacks. If I played in q concert, I would have some sort of MS event afterwards. I had a bad time after, On Tecfidera and now I’m on a mab. No more episodes, but my quality of life is not anywhere near as good. I get really tired and sleep a lot. I get dizzy in crowds and I’m JC virus positive. It’ll be 20 years since diagnosis next year and 30 since my first symptoms, so I’ve been lucky, sort of. Rebif was the only choice I had at the time. So support for my dmd was what I could glean from the Internet. Some places, like the MSS were great. Others told me that Rebif would not stop disability and that I’d likely die. Bollocks to that, was my response at that time. I’d have huge arguments with Dmd haters. They’d never been offered anything, so to their advice was valueless. The two magazines available offered no good advice. New Pathways was angrily opposed to DMD treatment, diet would work, we were told. TheMS matters magazine was a little more positive but seemed to embrace wheelchair culture. I wonder if MS was worse 20 years ago. What are the statistics on mobility nowadays? Have the DMDs helped to prevent damage? I believe that in my case treatment delayed progress.

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