It has become well known that people with Relapse Remitting MS, the form of multiple sclerosis that tends to have periods of time with marked improvements in between flare ups of disease symptoms, now have a much better prognosis and are demonstrating a slower progression to disability. This is thought to be since the introduction of DMTs around two decades ago. Before this time, the progression to disability was certainly more marked and varying in the MS population.
A recent study called ‘Outcomes in a Modern Cohort of Treated Multiple Sclerosis Patients Followed from Diagnosis to 15 Years’ has been one of the longest running and most detailed studies of this nature. The majority of studies to date that are cited in other literature are in fact those that were done before the increased use of disease modifying therapies, and are therefore unlikely to be representative of the modern MS population. This novel paper released by this group in the USA definitely provides a much clearer insight into how the outcomes have changed for someone diagnosed with MS today.
In this particular study, routine data was collected on the cohort of 184 newly diagnosed patients in 1984, which were followed for an average of 13 years overall. It was noted that the average age of the newly diagnosed patient was around 35, which is around typical even today. Three quarters of the patients in the study were seen at least once a year for the course of the study, and using the EDSS scale of disability it took 25% of patients 10 years to reach EDS scale 3.0, and 16 years to reach EDSS 6.0, where they were limited to the distance they could walk by some marked degree.
Whilst this may not seem particularly positive, it certainly suggests a significant change to the natural course of the disease as formerly a larger percentage of patients would have progressed to a higher degree of disability at a younger age. The study suggested that of those studied right through the course of the 15 years to the age of 50, around 20% had become reliant on a cane or walking aid.
In this particular study, these patients had in fact received one of the first line DMTs such as interferons, and of course with the newer more effective DMTs now available, these results would indeed be even more favourable.
The reason I thought this was particularly interesting was as we move into this era, it becomes apparent to me that there needs to be a different model for assessing the impact of MS on quality of life other than the EDSS scale, as parameters such as walking distance may no longer be fit for purpose. It strikes me that this is perhaps why so many people are limited in their capacity to obtain fair access to state benefits such as PIP for example. Equally, it appears that as MS changes in this manner, insurers offering life insurance products may wish to redefine how they treat PWMS looking to insure themselves…
I would love to hear your thoughts on this??