Engaging Patients in Their Own Treatment Decisions

Patients with multiple sclerosis (MS) want to be actively engaged in their treatment decisions, which will help their long-term health and medication adherence, according to speakers at the “Innovation and Optimization: Engaging Today’s Patients” talk at the 2014 ACTRIMS-ECTRIMS Joint Meeting in Boston, Massachusetts.

Peter Rieckmann, MD, with Sozialstiftung Bamberg Hospital in Germany, explained that among the principles that should guide disease management and improve outcomes for people with MS, patient engagement is one of the most important. The patients want to know about their disease and be engaged in treatment options.

“We must always remember that our patients are not passive…” Yoram Barak, MD, MHA, professor of psychiatry at Tel Aviv University, added. “They wish to be part of the decision-making process.”

Younger patients, those with better education, and females show a slightly greater desire to participate with their provider to make decisions, but across disorders and disabilities, at least half of patients want to engage with their physician, according to Barak.

However, while a higher education increases the desire to be involved in treatment decision making, it also increases the risk of discontinuing a disease-modifying therapy, according to Bruce Cohen, MD, professor at Northwestern University’s Feinberg School of Medicine. He added that, overall, medication adherence remains low, and poor adherence may even be underreported.

In particular, persistence — total time from initiation of treatment to discontinuation — is an issue for the disease-modifying therapies used for MS treatment, he said. Most who discontinue their treatments do so within the first 2 years.

“It’s important because studies have shown that adherence is related to outcomes in MS,” he said.

Although most individuals who are nonadherent will simply say they forgot, there are many other barriers, including adverse events, anxiety, and perceived lack of efficacy. Another factor related to discontinuation of medication is having unrealistic expectations about the results of therapies.

Cohen pointed out that studies have found patients with depression or anxiety were almost 3 times as likely to be nonadherent compared to individuals without those factors. As such, part of engaging a patient means treating his or her depression and anxiety to increase their medication adherence, he said.

Finally, Mark Freedman, MD, professor of neurology at the University of Ottawa and senior scientist at the Ottawa Hospital Research Institute, discussed finding new ways to optimize treatment and engage patients with positive messages.

Freedman called for a new way of defining whether or not a patient is free from disease activity. He says that providers need to be more accepting of some disease activity, especially since they are becoming better at picking up activity, which means fewer people can be considered free of it.

“If we’re going to accept a certain level of disease activity, we need to know what activity we’re going to worry about,” he said.

One of the ways to define activity that should be worried about is by using the modified Rio score, which scores patients based on a combination of MRI activity and relapse so physicians can define the patients at risk of getting attacks or disease progression.

“We need to realize that a certain amount of disease activity is the norm,” Freedman said.