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A new study is trying to find out why some MS patients go off their medications

February 07, 2013

By Andy Hyland

Sharon Lynch, M.D.

Though lots of time, money and effort are being spent to help come up with newer and better treatments for multiple sclerosis, scientists at the University of Kansas Medical Center and the University of Missouri-Kansas City (UMKC) are looking for a solution to a different sort of problem: helping patients take medicine that has already been proven to work.

Multiple sclerosis (MS) affects about 400,000 people in the United States and 2.5 million people worldwide. About 85 percent of those who are newly diagnosed have a relapsing-remitting form of the disease, where symptoms appear, but then gradually subside over a period of days or weeks.

The symptoms associated with relapses can vary widely among patients, but can include sudden loss of vision, double vision, trouble walking, weakness on one side of the body and numbness.

Jared Bruce, Ph.D., an associate professor and director of UMKC's Clinical Neuropsychology Lab, and Sharon Lynch, M.D., a professor of neurology at KU Medical Center, are working together on a counseling technique designed to help patients who have stopped taking medication consider the costs and benefits of starting back up again.

It's not an insignificant problem. According to the World Health Organization, getting patients to take the medications they've been prescribed is a bigger problem than the lack of treatments for most major diseases.

In MS and other chronic diseases, about half of all patients will stop taking their medication two years after it was prescribed, Lynch says.

Lynch says MS drugs have been tested, approved and widely prescribed to delay the onset of relapses. However, many of them take the form of injections that must be taken on a regular basis - sometimes every day.

"These medications are designed to prevent something from happening," Bruce says. "Therefore, a patient might take their medication and, in the short-term, feel even worse."

The medications can come with side effects, too.

The drugs have been shown to reduce the number of relapses overall by about 50 percent, Lynch says.

"One of the problems is that a patient can suffer the effects of a relapse for several weeks, but they may never completely recover," she says. "You have to figure out how to keep yourself going to take medications that don't have an immediate benefit. You almost don't know if it's working."

The researchers are testing out a form of motivational interviewing, where a patient discusses his or her case over the telephone with a counselor who listens to the patient's concerns and provides support. The goal of the sessions is to better understand why patients decide to stop taking their medication and help patients make an informed decision about their treatment in the future.

"It's essentially an educational program where you get people to decide for themselves whether this is worth doing," she said. "After all, we can't go into these people's homes and make them take the drugs."

The most important part of this counseling technique, Bruce says, is that patients make their own health care decisions after carefully considering their options.  The interviewers can provide education about medications, help patients find ways to counteract side effects or help them find programs that might alleviate the cost of the drugs, if necessary.

The counselors need not be doctors or highly skilled health professionals, but they do need to be trained in this type of therapy. The same technique has been effective in other areas, including helping people to take HIV medication and encouraging people to exercise and eat healthier.

"The goal of all this is to help people live more productive and happier lives," Bruce says.Kelly Winter, a 34-year-old pharmacy technician from Kansas City, Mo., was first diagnosed with MS in October 2008.

"In the beginning, I was pretty relentless. I never missed a shot, never missed a pill, no matter how bad it hurt," she says.

Eventually, however, she stopped taking the drugs after she began having an allergic reaction to some of her medication. The counseling sessions were helpful, she says, and now she's back on the medication and taking an over-the-counter allergy medicine to help control the side effects.

Winter says she works closely with her doctor to take a proactive approach to her own health care, something that was very important to her. The interviewers helped her focus on the long term.

"I don't want to end up in a wheelchair in two years," she says.

The research was funded in part by a pilot grant from Frontiers: The Heartland Institute for Clinical and Translational Research, which is funded by the National Institutes of Health (grant numbers TR00001 and RR033179). That program, headquartered at KU Medical Center, supports research that takes scientific discoveries and brings that knowledge to patients that can actually use it.

After the pilot project showed some success, the project received additional funding after the MS Society contributed a grant of more than $292,000 for the work. That grant will fund additional study in 80 more patients after the initial pilot study showed promise.

Last modified: Jul 26, 2018