What are multiple sclerosis (MS) relapses and what impact do they have on patients’ lives?
MS relapses are typically reflective of new neurological symptoms. However, it can be a worsening of neurologic symptoms that begins after a patient has been stable (generally for about 30 days), but relapses are persistent and consistent changes in symptoms that occur for more than 24 to 48 hours.
When that happens, we try to confirm relapse by ruling out other mimics of relapse - a pseudo-relapse- such as fever or infection.
Why can MS relapses vary in severity and what is thought to cause them?
Our patient population is heterogenous and the types of symptoms a patient has depends on where they have demyelination or axonal transection in their body.
In MS, lesions can occur anywhere in the brain and spinal cord. Damage to the central nervous system may affect any part of the body, with the severity of symptoms varying from patient to patient. These relapses may affect any bodily system and impact the patient in many different ways.
The most common presentation of a relapse is optic neuritis, which involves inflammation of the optic nerve and causes visual disturbances. As you can imagine, this can completely change the quality of life for a patient if they suddenly wake one morning to find their vision is blurred and that within a few hours or a day or two, they have completely lost vision in the affected eye and may not be able to drive, go to the grocery store, take care of their kids or go to work.
Is there anything patients can do to reduce the risk of relapses?
Right now, we highly recommend to all of our patients that they're on some sort of disease modifying therapy for MS. Again, this is relapsing forms of MS, and we now have data to suggest that the earlier patients are diagnosed and treated, the more likely it is that the frequency of relapses will decrease, along with symptom severity and the progression of disability over time.
What are the main symptoms of a MS relapse and why is it important for patients to be aware of their symptoms?
It is very important to be able to identify a relapse because that can help the clinician decide whether or not a patient’s current therapy has been successful or whether they need a different therapy.
A relapse can be the best indicator of how successful a treatment has been. Once a relapse has been identified, it needs to be established whether it is a true relapse event or a pseudo-relapse, which can usually be treated by reducing infection, managing stress, cooling the patient down if it's an ambient temperature issue and trying to get to the root of why the patient’s core body temperature has increased. Treatment for a true relapse, on the other hand, should be determined based on the individual patient’s needs. In addition to assessing the disease-modifying therapy, management of MS relapses through therapeutic targeting may shorten the duration of the relapse, promote recovery, slow accumulation of disability progression, and ultimately play an indirect role in reducing residual disability.
Could you please give an overview of the relapse evaluation tool the ARMS Questionnaire? How and why was this tool developed?
ARMS stands for Assessing Relapse in Multiple Sclerosis, which we hope will provide a validated standardized tool that can identify relapses and help to manage and evaluate them in our patient population.
Currently, we have standardized tools that we use in clinical trials, but a lot of those are centered around diagnostic criteria and trying to assess patient status over time rather than looking at relapse itself.
A tool such as ARMS is useful to the patient because they can self-report and have a say in how they think their symptoms are impacting their activities and daily living.
The questionnaire is also short and does not take long to fill out. The clinician can use the tool to improve communication with the patient and with other practitioners that may be seeing that patient outside of the MS clinic.
I'm hoping if it's picked up and used more often that it would serve as a standardized measure that can be used across disciplines to talk about our patients with MS.
How much is the tool being used at the moment?
Currently, my colleagues and I use various strategies internally to assess patients, not just in the clinic, but also when they call the clinic or if they send an electronic message asking about new symptoms.
The tool itself is recommended by myself and my peers. However, a lot of us also end up taking that type of questionnaire and modifying it to meet whatever triage needs we may have in our own clinic.
In our practice, we take those questions and turn them into a digital electronic version of a communication that we have with the patient.
What impact has the ARMS Questionnaire made on MS relapse evaluation?
By using this tool, patients can feel like they're involved in the partnership. As well as describing their previous experiences of relapses, they can talk about how those symptoms impact their quality of life.
Clinicians can use it as a quick tool to communicate with the patient and as a form of assessment to see if they can identify whether or not symptoms are indicative of a relapse.
I also think it's helpful to be able to record that information in the medical records. If the patient has a future relapse, we have a common way to track longitudinal data on that patient over time, rather than just relying on the patient remembering themselves or taking their own notes.
We then know how they were treated in the past, when their last relapse was and whether or not they tolerated the treatment that was given for that relapse. This can be especially important if patients are having cognitive issues or if there are other stressors in their life that impact their ability to recall or process information.
What further changes need to be made in order to improve relapse monitoring?
The tool is certainly a fantastic start because it gives us a standardized way of talking about relapses and helping to define them. It would be great to have more research on this type of tool and how it can impact patient outcomes in terms of access to care, the costs related to their medical condition, and just improving patients’ quality of life by allowing them to communicate with their clinician and staff from other disciplines such as primary care, rehab and home health, for example. In the United States, we refer our patients to those services all the time.
What do you think the future holds for MS relapse management?
The first thing that comes to mind is that we now have far more therapies available to help treat our patients with MS and those therapies are becoming much more sophisticated, which is fantastic because it reduces relapse rate. However, those relapses are becoming so crucial as prognostic indicators.
It's controversial, but there's some information published in the literature now about patients that are disease-free or have no evidence of disease activity.
We are now looking at sophisticated therapies that not only try to prevent relapses but also try to repair nervous system damage that's been caused by MS; therapies that can potentially help patients repair or recover the connections that are lost when demyelination occurs in the central nervous system.
Managing relapses becomes important because we try to keep the patient as stable as possible so we don't see any changes in their neurological exam. However, we're hoping that soon we'll also be able to see more and more improvement with regard to patient outcomes when using the new therapeutics that are emerging in the medical world.
Being able to identify those relapses and then trying to keep the patient as close as possible to their baseline may give us a better a chance of promoting recovery and repair after a patient has a relapse.
Where can readers find more information?
About Gina Remington
Gina is the Clinical Research Nurse Manager for the Multiple Sclerosis Program at UT Southwestern Medical Center in Dallas, Texas. She received her Bachelor’s Degree in Nursing from the University of Florida in 2003. After training as an Intensive Care Unit nurse in Burn Trauma, Gina relocated with her husband to Texas and returned to her true passion: clinical research. She received her certification as an MS-certified nurse following her six-month fellowship as the 2007 NMSS John Dystel Nursing Fellow.
Gina has also lectured on the role of MS nursing around the world, including Switzerland, Czech Republic, Germany, Sweden, and Australia. She is the lead author on a phase II clinical trial publication in MS as well as an IJMSC publication on Adherence in MS. In 2012, Gina collaborated with the NMSS and two co-authors to publish the “Nurse Practitioner’s Handbook” for MS. More recently, she was awarded the 2014 IOMSN Research Award and elected as an officer of the Multiple Sclerosis Nurses International Certification Board.
Currently, Gina directs the NMSS-sponsored National MS Nurse Training Program at UT Southwestern. She now also serves as an Editorial Board Member for the Journal of Neuroscience Nursing (JNN) and is the Degenerative Disorders Chapter Editor for the American Association of Neuroscience Nurses Core Curriculum.