Post on 30-Jun-2020
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Multiple Sclerosis Patient Communication Guide:FAQs and Management Pearls
Navigating a new diagnosis of multiple sclerosis (MS) can be stressful and challenging for patients. They may
experience a variety of early challenges, including:
• Little knowledge about the disease
• Difficulty facing the reality of living with an illness
• Confusion or struggles around treatment decision making
• Communication issues
• Lack of psychological support
MS is a complex disease. Understanding its course, symptoms, and
treatments is challenging—even for healthcare professionals. For
patients, it can be overwhelming, frightening, and discouraging. They
must confront the unpredictability of the disease, their fear of losing
control over it, losses in physical and mental abilities, and worries
about finances and jobs.
Patients today—more than ever before—are
encouraged to become engaged in their healthcare
and see themselves not just as “receivers of care,” but
also as key players in the management of their disease.
Similarly, we as healthcare professionals are evolving
from “providers of care” to motivators and supporters
of our patients.
We can help our MS patients most by making them
feel better about their future. This includes helping
them set realistic expectations about their disease
and explaining the critical role of treatment adherence.
We can assist with reimbursement, identify available
resources, and bring in professional resources when
needed. We can also recognize that family members
and loved ones are essential players on the team and
need support and guidance, too.
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Frequently Asked QuestionsMost patients with MS turn to their clinician as their most-trusted source of information—despite the
abundance of material available on the Internet and other mass media and from friends and family. Your
opinions and expertise are essential for validating—or invalidating—the accuracy and reliability of the material
they read. Encourage your patients to bring their list of questions to clinic visits. Below are some common
ones they may ask and suggestions for addressing them.
Can MS be inherited?Although MS is not directly inherited, genes do play a
role, and genetic factors may make certain people more
susceptible to MS by increasing their risk. Other factors,
such as the environment, also play a role.
What is MS?MS is a chronic neurologic disease that affects different
parts of the central nervous system at different points
in time. Researchers consider MS to be an immune-
mediated disease in which the body’s immune system
mistakenly attacks healthy brain and spinal cord tissue.
Is MS contagious?Some patients may have read that MS is caused by a
viral infection. Reassure your patients that they can’t
give MS to someone else.
What causes MS symptoms?By interrupting the messages that the brain sends
to the body, MS can cause many symptoms. These
range from weakness and muscle tightness to visual
changes, numbness, and bladder and bowel problems.
Most patients with early MS tend to have flare ups
(“relapses”) that then subside (“remit”) for long
periods of time. Reinforce with your patients that these
problems may come and go and are not a sign that their
medication is not working.
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How do I know what treatment is right for me?It’s important to explain to your patient that treatment options depend on lifestyle and
personal preferences, as well as clinical presentation. Also be sure that your patients
understand that you are only one player on their MS care team and that treatment
decisions are collaborative.
Regardless of the specific treatment chosen, help your patient understand that the
goals of therapy are to prevent further disability and preserve function. Explain that
people who take their prescribed medications—particularly in the early stages of the
disease—do much better than those whose disease is untreated. With fewer relapses,
patients have more time for work and play.
Let your patient know that MS research is very active and evolving rapidly, with many
new treatments in advanced stages of development. Researchers are continuing to
look for safer, more-effective, and easier-to-use MS treatments.
Frequently Asked Questions
Is MS fatal?The life expectancy for people with MS is only slightly
reduced compared with that of the general population
and has increased over time—thanks to research
breakthroughs. Many of the leading causes of death in
MS patients, such as heart disease, cancer, and stroke,
are unrelated to MS and are preventable or manageable.
Tell your patient that MS affects “quality of life” more
than “quantity of life.”
Is there a cure for MS?There is no cure for MS, but many therapies can keep
MS from getting worse and may help improve health
and quality of life. Research clearly shows that disease-
modifying therapies are very good at reducing relapses
and slowing progression. Emphasize that the earlier
therapy is started, the better.
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Disease-Modifying Therapies for MSFDA-approved medications are summarized in the table below. All have demonstrated efficacy in terms of
reducing the number and/or severity of relapses, slowing the progression of the disease, and/or reducing the
number and size of brain lesions. The major advantages and disadvantages of each are summarized in the table
below.
GENERIC NAMEROUTE OF ADMINISTRATION ADVANTAGES DISADVANTAGES
Interferon beta-1a SC 3 times per week Injections are not daily, smaller needles than IM therapy
Injection-site reactions, flu-like symptoms, depression, thyroid dysfunction, liver enzyme abnormalities
Interferon beta-1a IM once per week Once-weekly injections
Interferon beta-1b SC every other day Injections are not daily, smaller needles than IM therapy
Peginterferon beta-1a SC every 15 days Less frequent administration than non-pegylated interferon beta formulations
Glatiramer acetate SC daily No flu-like symptoms, smaller needles than IM therapy
Daily injections, injection-site reactions, vasodilatation, rash, dyspnea, chest pain
Glatiramer acetate (generic)
SC daily Less expensive and shown to be equivalent to daily glatiramer acetate
Glatiramer acetate SC 3 times per week Injections are not daily Injection-site reactions, vasodilation, rash, dyspnea, chest pain
Natalizumab IV every 4 weeks Infrequent injections, option for patients who have not responded to other treatments
Increased risk of PML, headache, fatigue, arthralgia, allergic reactions
Mitoxantrone IV every 3 months Infrequent injections, option for patients who have not responded to other treatments
Increased risk of heart damage and leukemia, nausea, alopecia, menstrual disorders, infections, asthenia, leukopenia, elevated liver enzymes
Fingolimod Oral, daily No needles, capsule Headache, influenza, diarrhea, back pain, liver transaminase elevations, cough, risk of PML
Teriflunomide Oral, daily No needles, tablet Increased ALT levels, alopecia, diarrhea, influenza, nausea, paresthesia, pregnancy category X, hepatotoxicity
Dimethyl fumarate, BG-12 Oral, twice daily No needles, capsule Flushing, gastrointestinal disorders, risk of PML
Alemtuzumab Infusion, daily for 5 days initially and then for 3 consecutive days 1 year later
Infrequent treatment, option for patients who have not responded to other treatments
Black-box warning for hematologic toxicity, infusion reactions and infections
ALT = alanine aminotransferase; IM = intramuscular; IV = intravenous; PML = progressive multifocal leukoencephalopathy; SC = subcutaneous.
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MS-Related Complications and Management OptionsMS symptoms can vary in type and complexity, and patients may not realize their importance or even that they relate to their disease. Some patients may be embarrassed to talk about certain symptoms, so communication is key. Some common MS symptoms and management suggestions are summarized in the table below.
SYMPTOM
MANAGEMENT OPTIONS
NONPHARMACOLOGIC PHARMACOLOGIC
Bladder Dysfunction
• Advise patients to avoid caffeine and drink plenty of water• Teach patients to “train” the bladder with pelvic floor exercises
and timed voiding• For peace of mind, suggest that they carry extra protection (pads)
and a change of clothes
• Anticholinergics• Alpha blockers• Antibiotics for urinary tract infections• Botulinum toxin• Cholinergics
Bowel Dysfunction
• Describe how a high-fiber diet, increased fluids, and physical activity can help
• Stool softeners• Suppositories
Mood Changes
• Assess changes in mood and anxiety• Discuss stress reduction and social connections• Make appropriate referrals for therapy and support groups
• Antidepressants
Cognitive Dysfunction
• Do regular screenings and/or refer for testing• Make suggestions for memory aids (eg, calendars, voice recorders)• Refer to a neurologist or neuropsychologist, if needed
Fatigue • Review medications and comorbid conditions• Discuss sleep hygiene, exercise, and contributors to fatigue in the
environment (eg, poor lighting)
• Amantadine (off label)• Modafinil (off label)• Amphetamine/amphetamine-like
agents (off label)• Armodafinil (off label)
Sensory Symptoms
• Acknowledge that sensations of numbness, tightness, tingling or burning can be puzzling and sometimes painful
• Describe stretching exercises, massage tips, and aids for balance and mobility
• Refer to a physical or occupational therapist
• Acetaminophen and non-steroidal anti-inflammatories
Sexual Dysfunction
• Make it easy for your patient to feel comfortable discussing this topic• Review medications that may be a factor
• Phosphodiesterase-5 inhibitors (for erectile dysfunction)
• Topical lubricants• Androgen therapy (low libido)
Spasticity • Recommend adaptive exercises as needed• Consider a referral for physical therapy
• Baclofen• Tizanidine• Benzodiazepines• Botulinum toxin• Intrathecal baclofen• Gabapentin (off label)
Speech and Swallowing
• Discuss the use of communication aids (eg, voice amplifiers) and tips for safer swallowing (eg, small bites and sips)
• Refer for speech and language therapy
• Percutaneous gastrostomy (in severe cases of dysphagia)
Tremor • Suggest environmental modifications (eg, large-handled utensils) and exercises for joint stabilization
• Understand that patients are often resistant to pharmacologic treatment; discuss the pros and cons
• Beta blockers• Clonazepam, gabapentin, primidone
(all off label)• Deep-brain stimulation
Vertigo • Describe maneuvers for repositioning when vertigo is felt • Meclizine (off label) • Benzodiazipines
Visual Symptoms
• Explain that eye pain and blurred vision in one eye are common, but interventions are not well-defined, and some of these symptoms may improve on their own over time
• Methylprednisolone (for optic neuritis)• Eye patch, intravenous methylprednisolone,
prism eyeglasses (for diplopia)
Walking • Discuss the benefits of exercise and recommend assistive devices (eg, orthotics, stabilizers) or physical therapy, if needed
• Dalfampridine
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Importance of Overall Wellness and Improving Quality of LifeMS affects a patient’s psychological, physical, social, and financial well-being throughout all stages of the
disease. Improving quality of life for patients with this condition is just as important as slowing disease
progression and improving survival. Clinicians can play an important role in this regard by encouraging
patients to eat healthfully, exercise regularly, and find emotional support.
Find emotional support. Any chronic disease increases stress, and MS is
no exception. Many patients with MS experience more symptoms during
stressful times. One way to relieve stress is to decrease the emotional
burden of the disease through a support network to share thoughts and
feelings and exchange information. Chapters of national MS organizations
(see next page) can give referrals for self-help and support groups. Some
patients prefer online communities or social media. Clinicians should stay
alert to the need for more emotional support and to signs of depression
and more serious psychological issues. A referral to a counselor, social
worker, or other specialist may be needed.
Eat a healthy, well-balanced diet. Although no specific diet has been
established for MS patients, good nutrition can maximize energy and
reduce fatigue. A dietary routine can also help improve bladder and bowel
regularity and sleep patterns. Discuss the basics of a nutritious, balanced
diet—such as increasing daily fruits, vegetables, and whole grains and
limiting saturated fat. For obese patients or those with specific dietary
requirements, a referral to a dietitian or nutritionist may be necessary.
Exercise regularly. Physical activity can help your patients maintain
flexibility, improve balance, and enhance emotional well-being. Encourage
your patients to jog or walk if strength and balance allow. If walking is
impaired, suggest stationary cycling or swimming. Many patients enjoy
yoga for the benefits of stretching and flexibility, as well as relaxation. Some
patients may need a referral to a physical or occupational therapist to
specifically address flexibility, coordination, balance, and strength.
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This activity is supported by an educational grant from Genentech.
© 2015 Med-IQ®. All rights reserved.
Sponsored by
Resources for Patients and CaregiversReassure your patients that they are not alone in facing the challenges of MS. Many organizations offer
advocacy, education, programs, and services for patients and families, support groups, and online tools
and applications for managing MS and its symptoms. Three key organizations to direct patients to for more
information are:
Multiple SclerosisFoundation
MSF
msfocus.org
Multiple Sclerosis Association of America
MSAA
mymsaa.org
National MultipleSclerosis Society
NMSS
nationalMSsociety.org