Discussing the Need for Patient Monitoring After Stopping Multiple Sclerosis Treatment


Deborah Miller, PhD, commented on strategies to maintain patient-provider communication following the discontinuation of disease-modifying therapies in MS.

Deborah Miller, PhD, professor of neurology, Mellen Center, Cleveland Clinic

Deborah Miller, PhD

The monitoring of patients with multiple sclerosis (MS) is crucial when taking disease-modifying therapies (DMTs), but it is also important when patients choose to discontinue treatment. Patients with MS may stop treatment for a multitude of reasons, including personal preference, a lack of efficacy of DMTs, intolerance, or ongoing disability accumulation.1

As patients will have individual motives when deciding to discontinue treatment, just as they will when continuing, it is necessary to integrate patient-centric measures to the comprehensive management of MS. One of these methods is the systematic assessments of patient health related quality of life via standardized patient-reported outcome measures (PROMS). Following her presentation at the 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), October 13-15, Deborah Miller, PhD, LISW, professor of neurology, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University, and staff member, Mellen Center for Multiple Sclerosis Treatment and Research, Cleveland Clinic, sat down with NeurologyLive to discuss efforts by the academic community to address quality of life in this patient population. 

Miller highlighted the importance of PROMS due to their validity and flexible administration methods, as patients can complete assessments remotely, from the comfort of their own homes. Especially considering stay-at-home orders and the ongoing COVID-19 pandemic, virtual evaluation is key and adds additional benefit in that data is immediately transferred to the patient’s provider for review. Miller further discussed reasons why patients may opt to discontinue treatment, and the need to maintain ongoing communication, with providers providing information and treatment plans for patients who stop treatment, just as they would those who choose to continue therapy. 

NeurologyLive: Can you provide a bit of background as to why patients with MS discontinue treatment? Are there particular risks or benefits to doing so?

Deborah Miller, PhD: There is increasing evidence that there are reasons why it would be reasonable to stop disease-modifying therapies in some cases. It's been well established that for individuals who have been non-treatment for 30 or more years, and who have no evidence of disease activity, would be likely to benefit from being off therapy. 

The other benefits are that some people feel as if they're not living day-to-day with a MS taking drugs or injectables, and that they're more than their MS. For individuals who are reluctant to discontinue therapy, oftentimes, that is out of a sense that they're doing well on their therapies, [and] that they don't want to stop something if it's working for them. But there can be consequences for remaining on treatment, especially related to side effects of the medications themselves, and the need for ongoing monitoring related to the disease-modifying therapies.

It’s a decision that should be made as part of a discussion between patients and their providers, about the pros and cons of remaining on or going off treatment, with the caveat that there would be ongoing monitoring to assure their disease status and their overall functioning related to related to MS.

What are the key strategies to ensure patients are monitored following discontinuation?

It starts with a discussion at the time when discontinuation is considered. Oftentimes, it's the physician or other health care provider who starts the conversation—it's not very frequently that patients themselves ask about going off treatment. Just as the providers can suggest the possible benefits—at least the considerations for stopping therapy—they should also include in the discussion, a comment about [how] going off therapy is just as much a part of a treatment plan for MS as remaining on therapy is. The discussion should include how [patient and provider] together would monitor their disease status and what frequency that monitoring should take place at. 

One of the things that we're concerned about is that, as people discontinue disease-modifying therapy, they may be less engaged with their health care team and may not be quite as vigilant about keeping routine appointments and having regular assessments done. That is a treatment plan that needs to be clearly established between providers and patients at the time a decision is made to stop disease-modifying therapy.

What are the benefits of using standardized patient reported outcome measures for this patient population?

We really encourage the use of standardized patient-reported outcomes for monitoring off disease therapy for several reasons. The first is their known validity. [Also], the flexibility for administration, so that people can complete these questionnaires remotely using any type of electronic device, and we can set up routine schedules for when they could expect to respond to these questionnaires. The data from those responses would be immediately transferred to the providers for their review, so that if there was any indication that there had been a change in some aspect of the person's status, that conversation could begin immediately. This would avoid people coming in routinely for monitoring [and] it could be done from the convenience of their home, but it would still keep the connection tight between the patients and their providers.

Is there anything we didn’t discuss that you would like to add?

I would like to add that MS is much more than relapses or progression on an MRI. Wellness is a key to healthy living with MS, and whether on disease-modifying therapy or off, a wellness approach with healthy diet, good mental health, [and] exercise, [is key] to living well with MS. 

In your opinion, what has been the biggest step forward for MS care this year?

I think that one of the biggest steps forward is our understanding of what it is like to be living in times of COVID-19 with multiple sclerosis. I think that the information that some people may be more vulnerable to the disease, depending upon what medication they're on, is certainly important for people on those treatments, but it's also good information for people who are not on those therapies, who know that they can safely take the vaccine, and with appropriate precautions, can be relatively certain that if they remain safe, they'll remain COVID-free.

Transcript edited for clarity. For more ECTRIMS coverage, click here.

Miller D. How to monitor patients after treatment stop? Presented at ECTRIMS Congress 2021; October 13-15; Virtual. Presentation ID 068.
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