There is an assumption at this meeting, amongst the key opinion leaders (KOLs) attending, that with the increasing complexity created by the release of the new wave of MS DMTs, patients will not be able to assimilate all the relevant information and be in a position to make treatment decisions for themselves. I disagree! Similarly, the debate yesterday about induction vs. escalation therapy was interesting in that the majority of neurologists favoured escalation therapy over induction therapy as it is supposedly “safer”. I am not sure we have enough long-term data on the new oral agents to make this claim. Interestingly, it was also stated that induction therapies (alemtuzumab, cladribine and anti-CD20) were the only therapies likely to offer the potential of a cure, as they do something fundamental to the immune system. If that is the case why can’t PwMS choose for themselves?
Any comments?
Prof G
Thanks for the updates.I saw a tweet from the symposium which said that pwms over-estimate disability in the short term, but under-estimate it in the longer term.The complication with MS is that the disease can last for decades. If it was cancer and you were given 3 years to live (without treatment) then most patients would readily opt for an effective treatment even if it came with very high risks.When I was diagnosed the neuro said "some people do very well with MS and live normal lives, other can become very disabled". Better prognosis of an individual would allow for a patient to make a more informed decision about the risks they are prepared to take. The other factor is an individual's take on what they value in life. I happily took one of the induction therapies as disability and it's impact on work / family etc (even if some way off) was not an option for me. Others may have a different view. The neuro has a key role in setting out the treatment options available and to set out the benefits / risks (and not just focus on the risks). Only the patient can decide what risk they wish to take and, even if they go for a more risky treatment, the neuro should support the decision.
Please explain the meaning of the terms induction therapy and escalation therapy
Induction therapy is a treatment you take for a short period of time and its effects last months or even years (e.g. Alemtuzumab or Cladribine). Maintenance therapy is a treatment that you need to take continuously to have an effect (e.g. IFN-beta, GA, Fingolimod). Escalation therapy implies starting with a less effective therapy (e.g. IFN-beta or GA) and escalating to a more aggressive therapy when you fail to respond to the safe first-line therapy.
Hmm, thanks for this. Since my diagnosis with MS I have met many people with the same condition. Some are very able to understand treatment options and are proactive in trying to maintain their mobility, etc. Others do not seem to have the same interest or capacity. So I think your question is not easily answered! It depends on the person, I think. But one thing I am sure of – most people, with or without MS, do not like to be patronised…I tend to agree with the previous poster's comments – people have to weigh up what is important to them, and this is likely to be different for each individual. In short, I agree with you, ideally people make their own decisions, with the information about treatment options being clearly presented by their neurologist or other suitably informed person.