Nearly half of multiple sclerosis patients do not always report their relapses to healthcare providers, two surveys indicate.
Mallinckrodt sponsored the surveys to better understand patients’ experience with relapses, which are sudden episodes of new symptoms or worsening of existing symptoms.
The company presented the survey results at the 7th joint meeting of the European Committee for Treatment and Research in MS and the Americas Committee for Treatment and Research in MS in Paris, Oct. 25-28.
A total of 5,311 Americans with MS took part in the first survey. Although 73 percent said they had had at least one relapse in the past two years, only 47 percent said they always, or often, contacted their care providers about a relapse. Forty-six percent said they sometimes or rarely contacted their provider, while 7 percent said they never do.
Fifty-eight percent of those who did not report a relapse said the reason was that their attack was not severe. Thirty-one percent said contacting a healthcare provider doesn’t help or that their provider had not asked them to report relapses.
In addition, 26 percent said the medication they take is either ineffective or they can’t tolerate it well. Twenty-four percent said they prefer to manage a relapse on their own. Sixteen percent said they failed to contact a provider because of the cost. And 10 percent said they failed to make contact because they had medication on hand.
Patients who were more engaged with a care provider during a relapse had fewer relapses, the survey showed.
Another finding was that patients were more satisfied with their care provider when they were treated within a month of reporting a relapse.
The second survey involved 250 patients who had had a relapse in the previous three years. Fifty-one percent reported that they didn’t always contact a doctor about a relapse, despite 91 percent of them saying that treating relapses are as important or more important than treating MS itself.
Fifty-four percent of those who did report relapses strongly agreed with a survey statement that their doctor had taken the time to educate them about the signs of a relapse. Eighty-three percent said it is very important to monitor the signs of a relapse. And 83 percent agreed that all relapses should be reported, regardless of severity.
All of the patients surveyed said they understood the common signs of a relapse, whether or not they report them.
“The surveys provide valuable patient insights that underscore the need for further education about MS relapse and its treatment,” Dr. Tunde Otulana, Mallinckrodt’s chief medical officer, said in a press release.
“Increased engagement and timely follow-up during and after relapse should be prioritized to enhance patient satisfaction with their treatment plan,” he concluded.
Why report every relapse when it takes months sometimes to get into the Neuro’s office? Not everyone feels it necessary to run to their Dr. with every twinge and ache. I myself refuse to take the steroids given to shorten a relapse so I don’t mention every relapse. Those are worse than the disease itself. I know when one is bad enough to get the Dr. involved.
MS patients are badly treated too many make money from them as they are vunerable . Many should hold their heads in shame truths will come out on news stations . Billions has been made from MS patients sadly many have died on MS drugs . Disturbing .
My doctor has never told me what qualifies as a relapse. The daily, weekly stuff I feel like tingling, numbness left side of face, brain fog, weak legs I suppose are all just symptoms?
Guilty! – I only reported one or two episodes to the doctor (not an MS specialist). There were more that didn’t get reported. I just waited for “recovery.” Worked okay – I’m retired now.
I’ve had relapses dismissed as migraines. Something I do not get. On rare occasion I am at the ER, they don’t know how to treat, or diagnose symptoms as relapse or new exacerbation. So when something happens, I wait. Wait for it to either go away, or wait till its too unbearable and roll the dice with treatment. Despite having a good medical coverage plan, and my treating neurologist is the head of the local Kaiser MS clinic, I have little faith…
I can’t tell you how reading this report AND the comments made me feel so good. Why? Because I’ve resolved to also not report any future relapses – unless they are so severe that I’m bedridden.
I especially agreed with the first two comments. I’m 58 and I’ve concluded that even the semi-ethical professionals in the MS field are either fundamentally committed to “more drugs!!!” (they act as hammers and see all of us as nails) or too dependent on the financial rewards of dependency.
I don’t wish to go thru semi-Hell to lop off, at best, more than a couple of weeks from my symptoms. No surprise I’m also not taking any of the very expensive (and I have good insurance) semi-placebo DMT’s. Sorry, but there it is.
Other than giving me steroids, which I really do not want to take (unless the relapse is so bad it’s going to put me on FMLA leave at work), I’m not aware of anything the doctor has to offer, so why call. I also feel like I’m bothering him, not because I feel he doesn’t care, but because I’ve never been told I should contact his office if I’m having a relapse. Other than offering toxic, expensive DMDs, nothing is ever proposed to treat me. It would be nice if the MS specialists would be willing to think outside the box. MS patients have nothing to lose.
Agreed,I’m not taking any toxic dmt’s either,its either a quick course of steroids or let it ride and hope for the best.
It is interesting and disturbing , how discouraged and alone many ms patients feel… left alone to manage the daily symptoms and exacerbation of ms…. my son , also fails to notify doctors of increases in symptoms, feeling that he is being bothersome in complaining and they have nothing to offer …