Navigating Secondary Progressive MS
Real World Health Care continues our observance of Multiple Sclerosis Awareness Month by shining a spotlight on the National Multiple Sclerosis Society. We spoke with Kathy Costello, MS, ANP-BC, MSCN, associate vice president of Healthcare Access for the National MS Society, about the Society’s MS Navigator program and strategies that patients with Secondary Progressive MS can adopt to help them manage their disease and its impact on their daily lives.
Diagnosing Secondary Progressive MS
Real World Health Care: Secondary Progressive MS (SPMS) can be difficult to diagnose. Why is that?
Kathy Costello, National MS Society
Kathy Costello: SPMS is an MS disease course that follows Relapsing Remitting MS (RRMS). Most people diagnosed with RRMS will eventually develop SPMS within about 15 years of their initial MS diagnosis. A patient needs to go through about six months of observed progression of neurologic symptoms, in the absence of a relapse, before SPMS is considered to be the disease course.
Because the transition from RRMS to progressive MS is gradual, physicians may not be able to tell exactly when it occurs. If the worsening symptoms are left over from the last relapse, with permanent but stable damage that remains after the inflammatory attack has ended, the patient is considered to be experiencing an RRMS disease course. However, if the disease continues to worsen even though the person is no longer experiencing inflammatory relapses, they have transitioned to SPMS. Diagnosis takes on further nuances when you consider that some patients with SPMS may still experience relapses from time to time and may demonstrate new inflammation in their brain and spinal cord, though this doesn’t occur as frequently as during RRMS
Impact of Progressive MS on Daily Life
RWHC: Is there a difference between SPMS and other stages of MS in terms of its impact on a patient’s daily life?
KC: No matter what type of MS someone has, impacts are the result of damage in the central nervous system. The central nervous system is our command center: the spinal cord governs our movement and other functions, while the brain manages higher level functions and interprets messages. MS interrupts those functions, which translate into symptoms such as generalized fatigue, slowed thinking, changes in vision, coordination problems, weakness, walking difficulties and even loss of bladder and bowel control.
With progressive forms of MS, including SPMS, those symptoms will worsen over time. Patients will experience more fatigue and more difficulty walking, for example. These worsening symptoms make it harder to participate in work, social life and activities of daily living at home. It’s important to note, however, that MS is heterogeneous. No two people with SPMS will be exactly the same. One person may have a tremendous amount of impairment while another may have far less, or may have a different type of impairment. When people hear the word “progression,” it can be frightening and can conjure images of wheelchairs, dependency and an inability to participate, but that’s not always the case.
RWHC: It sounds like the progression of MS affects not only the person with MS, but also the people around them as well.
KC: True, especially when it comes to the patient’s family. Most families and households have defined roles and responsibilities. When MS symptoms start to interfere with a patient’s activities, those roles may need to change. Frustration, anger and feelings of guilt can exist on both sides: from the patient who can no longer participate as she/he did before MS, and from the family members, who may need to assume more household or other roles over time.
The financial burden of MS can also put a strain on family dynamics, especially if the patient can no longer work or has a reduced earning potential because of MS symptoms. MS is remarkably expensive, even with insurance, which may not cover the entire cost of medications, rehabilitation or assistive devices like walkers and wheelchairs.
SPMS Treatments and Management
RWHC: Are there any treatments on the horizon for SPMS?
KC: There is an enormous amount of research going on in progressive forms of MS. One medication for SPMS, siponimod, has completed its clinical trials and is currently under review by the FDA. A decision on approval is expected very soon. Other treatments, including high-dose biotin, also are being studied.
With $32 million dedicated to research in 2019, the National MS Society is the largest private funder of MS research, and 94 percent of our research portfolio is relevant to progressive MS. In addition to treatment research, we are also funding research into better understanding the disease process, as well as lifestyle and rehabilitation-related management strategies.
We’re also a founding member of the International Progressive MS Alliance, which is accelerating research with an eye toward appropriate measurement metrics during clinical trials, how imaging or blood tests may be used to identify someone at risk for progression, and treatments that can slow or halt the process of progression. Of course our ultimate goal is a cure.
Support for SPMS Patients
RWHC: How is the National Multiple Sclerosis Society helping to support patients with SPMS?
KC: Among the many services and programs we have nationwide, our flagship programs here at the National MS Society is our MS Navigator program. The program matches patients with highly skilled, compassionate professionals who can connect them to the information, resources and support they need to meet the many challenges imposed by MS. MS Navigator offers a live, online chat function as well as a toll-free phone number at 800-344-4867. Patients can also connect via email and through our MSconnection.org community discussion board.
If our MS Navigators identify someone with highly complex needs, we refer them to our case management program, the Edward M. Dowd Personal Advocate Program. This program connects patients with case management organizations and individuals in the patient’s local community. We help to train those case managers so they are highly knowledgeable about MS, and we help them work toward solutions for patients.
I would also like to point out our Healthcare Access team, who work with healthcare professionals to ensure providers of all disciplines become more knowledgeable about MS and the services and expertise we offer The National MS Society funds a number of programs to ensure the workforce of the future including a medical student mentorship program to foster interest in a career in MS care, clinical fellowships for physicians who wish to specialize in MS care, and an MS track in 3 doctoral level physical therapy programs.
The National MS Society encourages SPMS patients to be as proactive as possible in mitigating the effects of MS. The disease gets worse when people develop co-morbid conditions such as cardio-vascular disease, so it’s important to follow a healthy eating plan, stay as active as possible, maintain a healthy weight and quit smoking. Depression is common in MS patients, and mood disorders can keep people from staying on their medications and participating in a healthy lifestyle. Above all, don’t suffer in silence. Speak up about any symptoms of stress or depression so that effective interventions can begin.