What can we do to improve how MS is managed in Europe? #BrainHealth #ClinicSpeak #MSBlog
The survey below shows that the practice of MSology across Europe is highly variable. This is based on many factors including resources, economics and cultural influences. The survey highlights a lot of differences in the practice of MSology, for example the interpretation of the MS diagnostic criteria and the use of DMTs according to their prescribing indication. Herein lies the problem. Variability means that pwMS are being managed differently across Europe, which is not necessarily based on the best available evidence and will almost certainly manifest with different outcomes.
One the reasons we launched our ‘Brain Health: Time is Brain‘ policy initiative was to address some of these imbalances. We want to smooth out variability of MS practice so that pwMS get the best possible care whomever they see. I now encourage all my patients to read the Brain Health document, preferably the full version rather than the abbreviated version, and their feedback has been unanimously positive. Knowing about how MS should be managed in the modern era helps pwMS understand and demand that they are managed well. Reading this document and being aware is called ‘patient activation’.
We are in the process of following up the policy document with the development of a continuous quality improvement tool (cQUIT) in the hope to encourage HCPs and pwMS to strive for the best MS care possible. The cQUIT may be the change agent that makes the policy document come alive and influence behaviour. I have learnt that information on its own rarely changes behaviour; you need ‘carrots and sticks’ to do that.
We are in the process of following up the policy document with the development of a continuous quality improvement tool (cQUIT) in the hope to encourage HCPs and pwMS to strive for the best MS care possible. The cQUIT may be the change agent that makes the policy document come alive and influence behaviour. I have learnt that information on its own rarely changes behaviour; you need ‘carrots and sticks’ to do that.
However, this neurocentric survey below highlights a trend in the healthcare sector to look at its performance and ask the question ‘Can we do better?’.
Fernández et al. Survey of diagnostic and treatment practices for multiple sclerosis in Europe. Eur J Neurol. 2017 Jan 31. doi: 10.1111/ene.13236.
BACKGROUND AND PURPOSE: Up-to-date information is needed on the extent to which neurologists treating multiple sclerosis (MS) in Europe are integrating rapidly evolving diagnostic criteria, disease-modifying therapies and recommendations for monitoring disease activity into their clinical practice.
METHODS: A steering committee of MS neurologists used a modified Delphi process to develop case- and practice-based questions for two sequential surveys distributed to MS neurologists throughout Europe. Case-based questions were developed for radiologically isolated syndrome (RIS), clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS) and RRMS with breakthrough disease.
RESULTS: Multiple sclerosis neurologists from 11 European countries responded to survey 1 (n = 233) and survey 2 (n = 171). Respondents agreed that they would not treat the patients in the RIS or CIS cases but would treat a patient with a relatively mild form of RRMS. Choice of treatment was evenly distributed among first-line injectables and oral treatments for mild RRMS, and moved to second-line treatment as the RRMS case increased in severity. Additional results on RRMS with breakthrough disease are presented.
CONCLUSIONS: Although there was general agreement on some aspects of treatment, responses to other management and clinical practice questions varied considerably. These results, which reflect current clinical practice patterns, highlight the need for additional MS treatment education and awareness and may help inform the development of MS practice guidelines in Europe.
CoI: I am a co-author on this paper and a member of the steering committee who designed this survey.
thank you for asking the question. this is why i get annoyed with the stock standard self serving liability protection statement that follows questions posed by people with ms and their families: 'speak to your neurologist'. yes, but what if your neurologist is a slow adopter who's just had a kid and has more pressing things to do than keeping up with the changing ms landscape?speak to your neurologist, and if she or he seems disinterest or unknowledgable, you deserve better and look for a new one has a different ring to the 'speak to your neurologist' stock standard advice.
yeah look for a new one
I never understood why NICE hasn't approved fingolimod as 1st line treatment, but approved alemtuzumab. I guess the decision was driven by economics.I doubt most of the European countries classify them similarly.
You talk about the importance of brain health and yes you are right. That is something we can do and it has no cost to the country. In fact its beneficial to us and the NHS if we look after out brain.There are somethings in MS over which we have little or no control. For example foot drop happens and there is nothing we can do. The FES device is able to restore some of the functionality and consequently we can be healthier. Take a bit more exercise etc have fewer falls and be less of a burden on the NHS. ProfG, you have talked about the FES and how it can improve a person's quality of life.It is wonderful. I use one and now I have very few falls, I used to be a frequent faller. Before I was given an FES I dislocated my shoulder twice and had to have my rotator cuff rebuilt. An FES costs £ 800, I cost the NHS several thousand because of my falls. I am sure my story is not unique.Without an FES I would be in a wheelchair, with an FES I can walk using a rollator. Why do some people have to fund their own FES and others get it funded by the NHS?
Why aren't pwMS offered an FES as a matter of course? Afer all, you wouldn't expect to be diagnosed deaf and not be offered a hearing aid, would you?But we're all sold on drugs, drugs, drugs, and sometimes they are not the only (or best) solution – we have to live with our current level of disability, but you get very little help to do so.
Unless it is prescribable we are rarely about it