DMTs carry a much higher degree of risk than nothing at all and the reality of MS means that attitudes towards risk need adjusting. It is fine to come into the scenario assessing things in a pre-diagnosis manner, that is understandable. A patient needs educating about the whole post-diagnosis scenario now. The lens through which risk, regarding treatments, has changed. From the risks of opting for no treatment at all to the risk/reward/benefit/utility of various DMTs, it is incumbent on the entire treatment team to manage and guide the patient. It is not coercion to make evidence-based arguments to treat the patient in the most efficacious manner possible. If they eschew any intervention then it needs to be after they have been fully informed.
Is it because many doctors are not that good at discussing risks and instead of risk the conversations about risk/benefit/utility/progression they’d prefer to tell themselves that something is better than nothing? Paling wrote a great article in the BMJ on this in Sep 2003 called Strategies To Help Patients Understand Risks . The graphics of the images used are downloadable for use. The EU hasn’t helped matters by trying to define a standardised set of words around risk. Berry et al in a 2003 study called Patients’ Understanding of Risk
Associated with Medication Use remarks that,
“Bryant and Norman, for example, found that physicians’ interpretations of the term ‘likely’ (with regard to risk probability) ranged from 25 to 75%. More recently, Timmermans reported that interpretations of the term ‘very likely’ ranged from 30 to 90%, even when presented in a restricted medical context.”
It is little wonder that doctors are reluctant to get into risk/benefit/utility type discussions, especially using EU mandated language when their own understandings can differ so much. This sometimes ends with the doctor urging the patient further their own understanding, but often without context. Many patients are less likely to understand risk/reward aspects, how to interpret a data sheet and some of the scary-sounding info they find online. They want professional help to actively guide them towards the most efficacious and suitable treatment. In our day and age, it seems a very odd attitude to take that something is better than nothing.
One patient told me that when they asked the Dr about a Mab and the reply was that they don’t have any experience of it in that hospital so it wasn’t an option! I suggested they remind the Dr (at the cost of the relationship – no doubt) that the GMC state, ‘You must give patients the information they want or need about the potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care.’ And, ‘any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.’
The NICE guidance for post-diagnosis is peculiarly political in the sense that, like politicians, it seems to say a lot, but when scrutinised doesn’t leave the reader any the wiser.
To conclude this rather lengthy preamble, every prescriber ought to read this Say & Thomson paper, The importance of patient preferences in treatment decisions—challenges for doctors.
From the informal patient feedback I took, there was a good 50% who felt overwhelmed at the idea of also having to choose drug when they were still trying to come to terms with their diagnosis. Whether the medic wants to believe it or not, that is how some people feel. They may not say it to the doctor – for a doctor is … *hushed tones now*… second only to God in the eyes of some – but they are happy to share these feelings when they perceive themselves as being in a safe space to do so. Back to the Internet again!
Assuming that, with expert guidance, a patient understands that intervening with a drug is a good thing, then they are likely to be more receptive to expertise and explanations of risk.
In the final installment, Part 4, I will look at some of the much softer, sociological issues that affect the prescribing relationship and perhaps illuminate a different viewpoint.
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.