Are you adherent or compliant with taking your medication? Big Brother is watching. #ClinicSpeak #MSBlog
“We know people, including MSers, don’t take medication as prescribed. This study looks at adherence to injectables. Surprise, surprise, MSers who are alcohol dependent and report problems with cognition are less adherent to injectables. The problem with perceived cognitive impairment is that it doesn’t always hold-up when formally tested. In other words it is a poor predictor of actual, or formally tested, cognitive impairment.”
“Interestingly, MSers with lower disability and longer disease duration were less adherent. Maybe in this group of MSers they perceive themselves to have more ‘benign MS’ and tend to miss injections. What do you think?”
“Although I am being flippant about this issue it is a major problem and extends into the oral therapies as well. Non-adherence is a big problem and is associated with poorer long-term outcomes. Therefore we need strategies to improve adherence. One strategy is to move all MSers onto an induction therapy or PIRT (pulsed immune reconstitution therapy). PIRTs are given as short courses and once give can’t be reversed. PIRTs by definition have the best adherence rates. However, PIRTs often require adherence with monitoring, for example post-alemtuzumab treated MSers need to have monthly blood and urine tests for at least 48 months after the last infusion. We think poor adherence is a big enough problem in MS that we currently have a grant application being assessed by the MS Society to look at new ways of improving adherence rates. I sincerely hope we get the project funded.”
“Interestingly, MSers with lower disability and longer disease duration were less adherent. Maybe in this group of MSers they perceive themselves to have more ‘benign MS’ and tend to miss injections. What do you think?”
“Although I am being flippant about this issue it is a major problem and extends into the oral therapies as well. Non-adherence is a big problem and is associated with poorer long-term outcomes. Therefore we need strategies to improve adherence. One strategy is to move all MSers onto an induction therapy or PIRT (pulsed immune reconstitution therapy). PIRTs are given as short courses and once give can’t be reversed. PIRTs by definition have the best adherence rates. However, PIRTs often require adherence with monitoring, for example post-alemtuzumab treated MSers need to have monthly blood and urine tests for at least 48 months after the last infusion. We think poor adherence is a big enough problem in MS that we currently have a grant application being assessed by the MS Society to look at new ways of improving adherence rates. I sincerely hope we get the project funded.”
McKay et al. Determinants of non-adherence to disease-modifying therapies in multiple sclerosis: A cross-Canada prospective study. Mult Scler. 2016 Jun 29. pii: 1352458516657440.
BACKGROUND: Poor adherence to the disease-modifying therapies (DMTs) for multiple sclerosis (MS) may attenuate clinical benefit. A better understanding of characteristics associated with non-adherence could improve outcomes.
OBJECTIVE: To evaluate characteristics associated with non-adherence to injectable DMTs.
METHODS: Consecutive patients from four Canadian MS Clinics were assessed at three time points over two years. Clinical and demographic information included self-reported DMT use, missed doses in the previous 30 days, health behaviors, and comorbidities. Non-adherence was defined as <80% of expected doses taken. We employed generalized estimating equations to examine characteristics associated with non-adherence at all time points with findings reported as adjusted odds ratios (OR).
RESULTS: In all, 485 participants reported use of an injectable DMT, of whom 107 (22.1%) were non-adherent over the study period. Non-adherence was associated with a lower Expanded Disability Status Scale score (0-2.5 vs 3.0-5.5, OR: 1.80; 95% confidence interval (CI): 1.06-3.04), disease duration (>=5 vs <5 years, OR: 2.23; 95% CI: 1.10-4.52), alcohol dependence (OR: 2.14; 95% CI: 1.23-3.75), and self-reported cognitive difficulties, measured by the Health Utilities Index-3 (OR: 1.55; 95% CI: 1.08-2.22).
CONCLUSIONS: Nearly one-quarter of participants were non-adherent during the study. Alcohol dependence, perceived cognitive difficulties, longer disease duration, and mild disability status were associated with non-adherence. These characteristics may help healthcare professionals identify patients at greatest risk of poor adherence
Can't take the survey on my phone for some reason. I am prescribed daily Copaxone, because 3x/week makes me break out. Over time, I have cut back to 5x week, because it's uncomfortable and leaves permanent disfigurement to my skin. Plus, I'm NEDA and my perception is that pharma doesn't actually know what the minimum effective dose is for someone my size, and it won't bother to find out until the next patent runs out–that was the clear message when 3x/week came out, and suddenly people were doing just as well with 120 mg a week, compared to 140mg on the traditional dose.Would LOVE an induction therapy, but no doc around here will give those kinds of drugs to someone like me. Just not sick enough.
Nueros don't communicate the importance of it. Why is it so important not to miss a dose if we go months and months between appointments. Have to wait weeks and weeks for MRI's. Message isit can wait.And then you are just told…well after a long time you just inevitably slide into secondary progressive and we can't do anything or much about it all really. Those of use who missed out on Lemtrada seem like our only hope is the NYU stem cell initiative cause all these drugs aren't going to do it for us.
the last time I had a injection of copaxone I could not breathe so that is out of the question I can no longer do injectables because of the damage it is doing to my legs and and body. my neuro does not want me to take anything that can cause brain infections. because of the federal law I now have to go to a pain management ctr which the last one I went to told me they do not give Rx's for narcotics, then why do they call themselves pain management center, sounds more like a rehab center. I used to take Avinza, but it did not work the full 24 hours so I was given morphine sulf twice a day I followed the directions I do not drink alcohol. I always take my meds the way I am told. at first the pain management dr was rude. he said you know if I call you tonight to come in tomorrow morning for a urine test I don't want to hear any excuses why you can't come in. I said Not a problem. then he told me to ask my neuro for valium, when I called them and told them my dr said if he wants me to take valium then he should have written the Rx out. and that is when they said they don't out Rx's for the narcotics. I said then what are you there for?