Taking your meds on schedule can be a challenge for people with MS. This is true of all people living with a chronic disease, but it might be particularly hard for PwMS. This could be because MS is a very long disease requiring medication over many years. There is also a lot of uncertainty and it can be tough to be reminded about MS every time you take your meds.
As you know, if meds are not taken accurately, then they are less effective. The meds won’t work as well to slow disease progression. Importantly, what is lost to MS cannot be regained.
There are hints from previous studies that how much a person knows about MS – the disease and the risks – may influence how easy they find it to stick to a medication schedule. It also seems that how much people have been able to accept their MS and accept their treatment affects their adherence. These things are important because they could all potentially be changed by education, information, support and other activities, which could then help people with MS follow their meds schedule more tightly.
So we are trying to collect information that shows that knowledge about MS (including risks) and acceptance of MS (and treatment) are related to adherence. We have put together an anonymous survey that asks about all of these things and takes about 20 minutes. You can find it here https://rhulpsychology.eu.qualtrics.com/jfe/form/SV_eA2DU9rsD36NlPw. We are psychologists working at Royal Holloway University of London and we have ethics approval for this study. The team
is led by me, Dawn Langdon, Professor of Neuropsychology and the researchers are Ed Smith and Lisa Healy, both graduate psychologists training to be clinical psychologists who will work in the NHS. We can supply social media material if you would like to send out the survey info to other people with MS. We will be sharing the results with various MS charities (including MST and MS-UK) via their newsletters and will report back to this blog.
If you have any comments to make about adherence or our survey, please contact me by email (firstname.lastname@example.org). Also, get in touch if you would like to help with our work investigating the psychological aspects of MS in other ways.
Professor Dawn Langdon
Royal Holloway, University of London
Assuming from the ethnicity question that this is for Brits only (?)
Same question. 🇨🇦
Yes, I wondered the same being in NI, but white Irish
“As you know, if meds are not taken accurately, then they are less effective. The meds won’t work as well to slow disease progression.”
“We are psychologists working at Royal Holloway University of London and we have ethics approval for this study. The team”
Why would you bother take a med that only slowed disease progression.
As opposed to hsct or alemtuzumab that stop progression…and don’t even require
“What about the ethics of Dr. that prescribe less effective therapy”…This would make
a better study.
The others aren’t “meds”…and should be removed from the market.
Can we get a post on the TAF anti viral study that someone linked a while back? If this works, how long can we expect it to take effect as this is a small study with an expected end of 2024.
Reading about the lead researcher and prof G pops up, what a small world! 😉