“Since my recent post on adherence I am beginning to realise how important this subject is and how relatively under studied it is in the MS space. Why? The survey below of Belgium neurologists indicates that at least to them it is important. Interestingly the survey simply asks them their perception about adherence amongst their patients; the majority perceived it as being good or excellent. Is this another example of a disconnect between physician perception and reality? Numerous studies have shown that what physicians perceive they do in clinical practice is a long way away from what they actually do in reality. Let’s hope this survey is followed up with a MSer study to actually measure adherence in real life; I suspect it will be much lower than expected. For example with injectables the average MSers misses numerous injections per month. I am sure the story will be similar with the orals.”
“Please note our adherence survey is still open.”
Decoo & Vokaer. Treatment adherence in multiple sclerosis: a survey of Belgian neurologists. Patient Prefer Adherence. 2015 Nov 19;9:1669-1676.
BACKGROUND: Poor treatment adherence is common among patients with multiple sclerosis (MS). This survey evaluated neurologists’ perception of treatment adherence among MS patients.
MATERIALS AND METHODS: This questionnaire-based survey of Belgian neurologists treating MS patients was conducted between June and July 2014. Face-to-face interviews with the neurologists were based on a semistructured questionnaire containing questions regarding the perception of the treatment-adherence level.
RESULTS: A total of 41 neurologists participated in the survey. Of these, 88% indicated frequent discussions about treatment adherence as beneficial for treatment efficacy. The mean time spent on the treatment-adherence discussion during the initial consultation was 11 minutes, with 24% of doctors spending 5 minutes and 24% of doctors spending 10 minutes discussing this issue. The majority of neurologists (56%) perceived the adherence level in MS as good, and 12% perceived it as excellent. The majority of neurologists (64%) indicated intolerance as a main cause of poor adherence, and all neurologists reported insufficient efficacy as a consequence of nonadherence. The importance of adherence in the neurologists’ practice was evaluated on a scale of 1-10, with 1= “not very important” and 10= “very important”: 44% of doctors indicated a score of 10, and the mean score was 9.0.
CONCLUSION: Belgian neurologists consider treatment adherence in MS as essential for the benefits of therapies. However, although neurologists are aware of the consequences of nonadherence, they generally spend limited time discussing the importance of treatment adherence with their patients.
My quick thoughts: when I was on an interferon I occasionally skipped a shot. The reason – It wasn't improving my disease (reduction in EDSS) and only promised to reduce relapses by 30%, so did it really matter that much if I missed a few each month. There was also the reminder issue – getting the injection out of the box…. just reminded me I was ill with an incurable disease. The exercise issue is a strange one. I did stacks of exercise before I was diagnosed. I exercised to be fit and healthy, but I was sold a pup by the medical profession as they told me exercise is good for your health / long life etc. why should I believe the same profession that tells me exercise is good for you when you gave a disabling neurological disease. I'm always put off when I see MS websites with picture of people in wheelchairs using bean cans as dumbells etc. My attitude changed when I got an induction therapy (no more adherence problems) and saw a neuro-physio. She showed me how to strengthen my core and how to address my weak areas. More generally MSer would be more adherent to their drugs and exercise if there was a longer term carrot i.e. in ten years we will have drugs that will promote some repair etc. so keep your CNS as healthy as possible by taking the drugs to the manufacturer's instructions and exercising as much as possible. Your brain health initiative is an excellent start.
Exactly what my physio tells me: 'There'll be no good being given the wonder drug in ten years' time if you've let your body deteriorate'. I also think that neuros should be more active in explaining how general good health is connected to MS issues, and how DMDs (how they work and the importance of adherence) are only part of the equation. I truly didn't make the connection for a long time.
May I suggest a couple of elements to this : Provide more complete face to face education ahead of MSers starting on any (not just DMT) medication that covers initial side effects, pharmacokinetics (so people understand why adherence is important and how quickly the treatment will affect them). Regular checking of adherence issues using open-ended questions rather than "are you taking your medication regularly ?"Secondly, adherence to DMT should be considered within the holistic treatment regime. Although I am on Tysabri, so I travel to hospital once a month, I need to take symptom-relieving medication 5 times per day on top of lots of stretches and trying to take some exercise. If there was a self-administered DMT as well I could imagine finding it overwhelming at times. So a MS nurse reviewing whether there could be a more efficient way of managing medication might be incredibly helpful. I use alarms on my phone to remind me to take medication / do my physio exercises.
The RebiSmart electronic injector tracks every injection (with date and time it was done) and has some way of doing a download of the data. Injections can't be faked because the machine won't inject unless in contact with skin, and if skin contact is broken during the injection the machine pauses the injection.It was a great little device, and during nearly a year on Rebif I only missed about 3 or 4 injections – and that was due to "operator error" and not the machine (even though I luckily don't suffer from cog fog). Problem was that the drug side effects led to me stopping Rebif, and as I can't identify every having had an actual relapse in the years before (and after) I was finally diagnosed, it seemed pointless to continue with a drug that made all my symptoms worse, and wasn't going to stop the relapses I didn't have in the first place.(I think you have reported previously on this blog about at least one study that looked at non-adherence – I seem to recall a post from two or three years back – but then I could easily be mistaken)
I find the spray or drops vit D3 supplements easier to remember to take than the tablets. May be because it's not another tablet to remember to take. I can just put the drops in my drink. The tablets are often cheaper though.
RRMS patients are non adherent to their medical regimens because they do not significantly halt disease progression or offer any improvements. It has nothing to do with their cognition. Why would a person in their right mind continue to take a drug with severe adverse reactions when you see yourself decline year by year. You take your DMD every day and by current statistics the majority will continue to decline in terms of their MS and most will shift to SPMS in 15 years. For SPMS and PPMS, there are no current choices, which is disgusting after the billions that Big Pharma has generated over the years off the backs of MS patients by taking inefficacious drugs. The government regulating bodies need to do something about this today through changing of funding to researchers or by changing taxation of Big Pharma so that a needed drug gets bigger tax breaks and useless recycled drugs are taxed much higher and go back to meaningful research. Medications currently available do not stop this transition to SPMS thus far according to any clinical trials. You take your CRAB drug and at best they offer 30% reduction in relapses over placebo with no effect on disease progression. The newer drugs (Gilenya, Tecfidera, Alemtuzumab, Tysabri) offer marked improvement in relapse rate but very marginal improvement in terms of disease progression. It seems as though research is "beating a dead horse" at reducing inflammation but has done very little in terms of disease progression likely confirming that there are 2 disease processes going on at the start of the first MS episode. Almost all funding in MS should be going now to neurodegeneration and regeneration.
Re: "The newer drugs (Gilenya, Tecfidera, Alemtuzumab, Tysabri) offer marked improvement in relapse rate but very marginal improvement in terms of disease progression."You are not correct on this one. These drugs have a much bigger impact on average on disease progression than the CRAB drugs; it is just that you have to start them early in the course of your disease to have the most impact. Once you have acquired damage it is too late to reverse it.
Yes, their numbers are statistically significant but correct me if I am wrong about the following statistics on the newer generation MS drugs regarding disability progression. Gilenya offers a 30% reduction vs placebo at 12 weeks, BG-12 offers a 38% reduction at 12 weeks vs placebo, Natalizumab offers 42-54% reduction vs placebo and Alemtuzumab offers a 42% reduction vs placebo. While these numbers are statistically significant, they are far from perfect. Also, disability progression should not be decided at 12 weeks that is used in some of the trials. Yes, they are much better than the older generation MS drugs, which was not hard to do as they had no effect on disease progression.
Doctor G, how much damage are we talking about? For example, if one has ten t2 lesions or brain atrophy or permenant hypointensities? At what point do you feel comfortable saying ones disease is early or late and that a more potent dmt will halt disease progression. For most people with ms it would seem that a majority will already have damage at presentation and the only benefit would be an additional 40% over crab in reducing relapses and the possibility of residual deficit from said relapses.
I'm on a tablet (Tec) the blister packs help as they have days of the week on the pack, so I can see if I've missed one.
I think habit and motivation are part of it. I have always exercised, I enjoy it (though no longer do the activities I used to), and I think most importantly I am motivated. I swim, and it is very pleasant ot be in an environment where I do not need/use a walking aid, and am just the same as everyone else – apart from the serious people who use fins to give them extra speed! Actually I suppose they are getting a better work out as they are working against the water with alarger surface area. Good that you are looking at htis aspect, as well as the myriad of other things you are investigating.
Re: "Good that you are looking at this aspect, as well as the myriad of other things you are investigating."Improving adherence is part of routine clinical practice. If we have a problem with it we need to address it to improve patient outcomes. At Barts-MS we try and promote an holistic approach to the management of MS.
I have to clarify, that I'm not exactly "forgetting" to take my GA. I've DECIDED not to take it as often as prescribed. I take 20mg 5x/week because 1. I'm NEDA, 2. I can't take 40mg (long story), 3. I only have three places that work as good injection sites.
I would say that talk to your neuro or nurse about thisDrugs have prescribed methods of administration and if you do not adhere to the prescribed methods of administration then there is the possibility that the treatment will not work.
I have SPMS so no DMT but I have to take drugs to sleep through the night otherwise I am woken up by spasms.Yes I have forgotten to take my pills at night even after getting them out (is that the MS upto its usual tricks) but a routine is essential. Of course this assumes the persons wants to take the drugs in the firstplace. If I forget them then my sleep for the night is neglibible so that is the motiveWhere possible a day of the week on the blister pack would help. Also I think knowing that there is someone else intereted in the drugs you take where there are no obvious side effects would be a good idea. So routine and knowing that someone else is interested are 2 important considerations.