ClinicSpeak: a new era of more limited patient engagement

Are we entering an era of more limited patient engagement? #ClinicSpeak #MSBlog #MSResearch

"I saw a patient earlier this week who came to the Royal London Hospital for a second opinion. She had been under the care of a neurologist at another London teaching hospital, in a general neurology clinic, for 5 years. The particular neurologist had taken the 'watchful waiting' approach to DMTs; in his opinion she did not meet the UK guidelines for DMTs. The straw that broke camels back was that when she asked him about the two new oral 1st-line DMTs available in the UK he did not know about them. Interestingly, the two medical students sitting-in on the consultation had heard about them. As a result of this, this patient sought a second opinion. This lady has been living with active MS for the last 5 years and should probably have been offered DMTs 5 years ago. In the last 5 years this lady has had several 'mild' relapses, developed unsteadiness of gait and has lost her job. Although she is fully mobile and functional, MS has had a major impact on her life. He current MRI shows a high lesion load, three Gd-enhancing lesions and obvious brain atrophy. This clinical vignette shows that with the emergence of multiple DMTs the management of MS is becoming increasingly complex with a strong argument for the disease to be managed by sub-specialists. If not the latter, then we as a community need to make sure that general neurologists are up to speed with the new DMTs and the shift in the treatment paradigm to early effective therapy with treat-2-target of NEDA (no evident disease activity)."

Saying No to patient-choice!
"The other thing that is becoming obvious that patient- or MSer-led decision making is becoming more difficult. There are simply too many DMTs for MSers to be able to understand all the intricacies of  treatment to make a truly informed decision. I am therefore moving back towards clinician-led decision making in which the neurologist and team of healthcare professionals decide on the treatment strategy and provides the MSer with a smaller, more limited, number of options. For example, I saw a new patient in my MS clinic yesterday who had highly-active MS; 3 relapses in her first year and 2 disabling relapses in the last 12 months with an active MRI. Her MRI has a large number of posterior-fossa lesions and she has already developed some fixed disabilities (unsteadiness of gait, bladder dysfunction and right-sided weakness), both of which are poor prognostic factors. As this lady has rapidly-evolving severe MS, a sub-type of highly-active MS, and a poor prognostic profile I only offered her two options, natalizumab or alemtuzumab. I simply explained to her why it would not be appropriate for her to be offered other less effective 1st-line therapies. If she chooses natalizumab, and turns out to be JCV-seropositive, she will only have natalizumab for 12 months and will then be transitioned onto fingolimod. This lady is very fortunate that NHS England are allowing us to use natalizumab and alemtuzumab as 1st-line options. I am aware that in some healthcare environments this patient would have to be started on a less effective 1st-line therapy and would only be able access more effective therapies once she had failed one, or more, 1st-line therapies."

CoI: multiple

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