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.
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.
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.10–12 … 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.