Fred Lublin, MD (FL): I am Fred Lublin, the Saunders Family Professor of Neurology and director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Icahn School of Medicine at Mount Sinai in New York City.

Aaron Miller, MD (AM): I am Aaron Miller. I am the medical director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai and professor of neurology also at the Icahn School of Medicine at Mount Sinai in New York.

Stephen Krieger, MD (SK): I am Stephen Krieger, also a professor of neurology at the Icahn School of Medicine at Mount Sinai in New York and a neurologist here at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis.

Mitigating Patient-Related Barriers to Disease-Modifying Therapy (DMT) Adherence in Multiple Sclerosis (MS): Real-World Strategies

FL: I would say the side effects are the number 1 — well, maybe the number 2 to adherence — and number 1 is problems with their insurance company, which we probably did not include in your list, but nevertheless is a major factor in what medication individuals get and, I should say, a major annoying factor because it impedes optimal healthcare. But side effects are, I think, the next major cause of nonadherence.

One of the discussions that we have with individuals at the start of the DMT discussion, which is — for my colleagues and I — a very long one, what is someone willing to take? Some people would prefer a pill. Some people even prefer injections. Some people prefer an injection every 6 months. Some people would rather do it themselves every month. So that becomes an important factor as to whether they are going to take the medication.

The other aspect is how much trouble is involved — that is besides having to take the medication, how much follow-up is necessary, what studies have to be done, and such.

AM: I would say that 1 of the main factors in adherence is really a combination of the patient and the physician. That is a failure of the patient to either hear or listen to what the practitioner has said about the medication before he or she starts it or a failure of the provider to properly educate the patient.

I have found that if patients are properly educated about what to expect from a medication and then they get the side effects — because all of these medicines have the potential to have some side effects — if they know and expect what to get and then it happens, they are not taken by surprise and they are much more likely to be able to tolerate that and continue on the medicine. If they are surprised, then they get an annoying tolerability issue and they just stop the medicine because they think it is bad for them. It is very hard to get them back on that medicine.

SK: I think building on what you both have said, the physician-patient or clinician-patient conversation about expectations is important, not just in terms of the side effects, but also in terms of, I think, what success looks like. One of the reasons I have found that people become nonadherent to an MS medicine is because they may not fully understand what it is intended to do for them.

Sometimes people come off of their medicines because they feel that they are progressing or getting worse or that their symptoms have not been improved, which is in some ways a misunderstanding about what a DMT is principally intended to do for them. So I think setting expectations about what success looks like — preventing relapses, preventing new lesions, etc — is an important part of keeping people adherent to the strategy.

But the other side of the coin is sometimes people become nonadherent to an MS medicine when they are doing really well because they may feel that they no longer need it. So sometimes nonadherence can be, in a sense, the victim of the success of the medicine at preventing some of those things and again, rewarding adherence or celebrating success of treatment, I think, is an important part of keeping people taking it.

AM: As a follow-up to what I said before, I think it is important that this disease, this discussion of DMTs, takes place in a proper setting with a proper allocation of time. I realize that many primary care doctors, or more importantly, general neurologists, may have time constraints that make this difficult, but we allow a long time. This typical conversation on my part takes somewhere between 30 and 45 minutes and I never do it at the time the patient is first diagnosed. Once they get the diagnosis, the ears shut down. They do not hear anything you say after that, so I would rather do this at a separate visit and much preferably in person, although it can be done by video if that is necessary.

Psychosocial Barriers to Adherence: Enhancing Engagement Through Supportive Strategies

AM: Again, this depends in part on the nature of the medication. In all cases, a supportive home environment is going to increase the likelihood of adherence. Some of these medicines are difficult to take, particularly injectable medicines that the patients give themselves. Other medications that may require the patient to leave their home to go, for example, to an infusion center may entail the need for the assistance of somebody in transportation. So having a person who is close to the patient involves not only giving the psychological support, but sometimes the actual logistical help that is necessary.

FL: These medications are extremely expensive, so financial issues do arise and we have had patients who have stopped taking the medication because they just cannot afford it. Interestingly enough and maybe surprisingly enough, when some of these drugs go on to become generics, it puts more financial stress on patients because they lose access to some of the patient assistance programs and such, but there are financial constraints to taking the medications.

SK: I think from a psychosocial perspective, how a patient views their medication is important. If someone views it as an opportunity, a gift in a way to try to control a chronic disease, I think they can be much more positive about it and maybe less reliant on their family members and others to sort of prop them up to help keep them adherent.

Then on the other hand, when a patient has a great deal of depression perhaps around the diagnosis, a feeling of hopelessness or loss of agency, I think that psychosocial support from both their friends and family, as well as perhaps from therapists and others can be helpful. Similarly, if there is a huge anxiety component to medications, as I think is particularly true for some of the self-injections — people can really develop a great deal of anxiety around the giving of a self-injection.

There are other forms of psychosocial support — nurse educator support both from the companies and the physician’s office or the MS center; that can really be helpful to try to reframe the doing of the medicine, be it a pill or an injection or an infusion, in a more positive, more affirming way to help keep people adherent to it.

AM: I think on the subject of generics, which is now a big deal for us in the MS world because many of our DMTs are now available as generic preparations, I think there is a lot of misunderstanding on the patient’s part about what generics are. Many patients have an intrinsic bias against going on generics, which may influence their adherence to some extent, so I think it is important to educate patients about what generics are and the safety and efficacy of those medications that are comparable to the parent drug.

Boosting Adherence Through Treatment Satisfaction: Optimizing Patient-Clinician Dialogue

FL: Dr Miller told you that it takes 30 to 45 minutes to have a careful conversation on what is going on and Dr Krieger mentioned what to expect from the therapy. Once you have done those 2 things, you have really done what is most important for the patient to understand what it is doing for them to be satisfied with their therapy.

SK: I think also leaning in to help someone with side effects or other problems that might diminish their treatment satisfaction is important. For instance, many of our infused medicines are given with a set of adjuvant medications designed to minimize infusion reactions. Those can be customized for an individual person to perhaps minimize their exposure to steroid or minimize their exposure to a sedating antihistamine if those things cause them more problems.

On the other hand, if someone is having mild infusion reactions, sometimes those medicines need to be increased to make the entire experience more satisfying and less fraught. I think not approaching it as a 1-size-fits all or simply that there is a protocol and everyone has to follow it, but rather trying to customize things towards treatment satisfaction can help patients with adherence in the long term.

AM: I think it is also important to emphasize the patients as part of that educational process in the case of some anticipated side effects to let the patient know that we have ways to mitigate those responses and alleviate some of the symptoms that might allow the patient to more comfortably take the medicine or remain on the medicine. And always letting the patient know that you are available for them to contact you, so it is not like write a prescription, give them a pamphlet, and then disappear into the ether.

This discussion was edited for clarity and length.