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.