I have just spent two days attending the 2018 or third Cleveland Clinic Neurological Institute MS Summit on 'MS Treatment Strategies'. I had to give a talk on composite outcomes in trials and clinical practice. I am not sure why I was asked to cover this topic as I would not rate myself as being an expert on MS-related outcome measures.
As promised I have made my slides available.
The objective of the meeting was to stimulate discussion and get consensus on going beyond typical treatment guidelines for managing people with MS. Can we push the envelope to improve MS outcomes? I am sure we can we just need to change our treatment target beyond what we are prepared to accept today. Despite this, I get the impression that most neurologists seem to target short-term goals, i.e. NEDA over the next year or two. I personally think we should be 'maximizing brain health' over the life of our patients. It is our responsibility to make sure we prevent end-organ damage so that our patients get to old age with as much brain as possible to age normally. What do you think? I had the opportunity of visiting the Mellen MS Centre, which provides quite an exceptional MS service. I was bowled over by how many resources are at hand at the Centre; we could only dream of having similar resources in 'austerity NHS'. For example, there are full-time technicians who assess patients at each visit using a standardised battery of outcome measures. The results of these outcomes with their MRI scans are immediately uploaded into the electronic medical record so that they can impact on decisions there and then; i.e. at the same clinic visit. In comparison, within the NHS there is a neuro-radiology backlog that means that it typically takes weeks to get our MRI reports back. The latter is not the fault of neuroradiology; there is simply not enough neuroradiology consultants. We are in the process of implementing an asynchronous system where our patients will come up about a month before their annual clinic appointment to have an MS MOT*; i.e. to have all their outcome measures done, including their MRI, blood monitoring and possibly a lumbar puncture for CSF neurofilament levels. They will then come back for the follow-up appointment with all the data ready for assessment. This will helpfully standardise the annual follow-up assessments. In addition to this, we are designing a programme for our patients to prepare for this annual assessment. They will need to come to the clinic with a list of objectives and what they want the appointment to achieve. It is becoming clear that standardising MS management is one way of reducing the variation in the way we manage MS across the UK. * MOT = The MOT test (Ministry of Transport, or simply MOT) is an annual test of vehicle safety, roadworthiness aspects and exhaust emissions required in the United Kingdom for most vehicles over three years old used on any way defined as a road in the Road Traffic Act 1988.