Putting Patients First
MS Nurses Wear Many Hats to Deliver Superior Care
By Christine Norris
MS Nurses and Nursing Certifications
Nurses who specialize in multiple sclerosis perform many roles to establish care, continue care, and sustain care. They not only help diagnose and treat the disease, but also support a wellness-oriented quality of life through education and advocacy. These experts also help families cope with the often difficult byproducts of MS, such as job loss or reduction in hours worked, depression, changing family roles, and sexual dysfunction.
"MS Nurses must leap tall buildings in a single bound, incorporating the qualities of teacher, leader, advocate, caregiver, social worker, Florence Nightingale, and cheerleader," says June Halper, an MS Certified Nurse (MSCN), Adult Nurse Practitioner (ANP) and Fellow of the American Academy of Nursing (FAAN). Halper holds the positions of executive director of the Consortium of Multiple Sclerosis Centers and executive director of The MS Center at Holy Name Hospital in Teaneck, New Jersey. Approximately 2,500 clients are seen yearly at her center. June Halper is also a member of MSAA's Healthcare Advisory Council (H.A.C.).
Another member of MSAA's H.A.C. is Advanced Practice Nurse (APN) Amy Perrin Ross, MSCN, who works as the neuroscience program coordinator for the MS Center at the Loyola University Health System in Maywood, Illinois. With 25 years of experience as an MS Nurse, Perrin Ross agrees that the role of MS Nurse has expanded. "It's much better now than when I started. Before there was a great need for case management. Now my role is more to help patients understand the importance of remaining adherent to disease modifying therapies and to assist them with symptom management," she says. "But the biggest issue is helping them negotiate the healthcare system in this country. It's incredibly cumbersome."
Halper stresses that it's important to know that all nurses working with MS patients cannot be grouped together generically. They have different levels of education and preparation. Specific certifications include: LPN (Licensed Practical Nurse), RN (Registered Nurse), BSN (an RN with a Bachelor of Science degree in Nursing), and MSN (Master of Science degree in Nursing).
"The MS Nurse comes in a variety of packages, and nursing services for individuals with MS can be provided by a wide variety of nurses. Their level of preparation determines how much care they can give patients. For example, some of my colleagues can only renew prescriptions, while I can prescribe them," says Halper. "Nurse practitioners and advanced practice nurses are more knowledgeable with helping patients manage specific MS problems than a non-specialized nurse. For instance, they can identify the high-risk factors for mental illness, such as depression, and can find different models of intervention to help."
To earn the designation MSCN (MS Certified Nurse) from the Multiple Sclerosis Nursing International Certification Board (MSNICB), nurses should have experience in caring for MS patients over the course of at least two years and pass a comprehensive exam. The MSNICB has more than 600 MS-certified nurses around the world.
Besides helping nurses obtain their MSCN certification, the International Organization of Multiple Sclerosis Nurses (IOMSN) provides networking opportunities and support services to help members achieve their goal "to positively impact the care of people who are affected by MS." To become an APN (Advanced Practice Nurse), a candidate must have a certain amount of clinical experience, pass national licensing exams in order to practice, and maintain the licenses through ongoing educational activities and testing.
To receive the ANP (Adult Nurse Practitioner) designation, candidates must have a master's degree in healthcare and complete a number of post-master's courses in their specialty. The Consortium of MS Centers (CMSC) also provides education and support to its growing roster of MS Nurses.
Although Halper says that patients prefer working with a nurse who is knowledgeable about MS, she points out that doing so is not always realistic. "In certain parts of the country, there may be only one nurse with that kind of experience."
To close that gap, the IOMSN is helping experienced RNs gain valuable experience in the specifics of MS through two-day, on-site apprenticeships with an advanced practice MS Nurse. Perrin Ross recently hosted a nurse at Loyola for the program. "It's an invaluable experience for the person visiting. By watching what I do, the nurse sees how much care an MS Nurse gives," she explains. "The practice of medicine has changed. We [MS Nurses] fulfill a big part of the role that doctors and social workers used to fill. MS patients really need someone now to coordinate their care. They need someone to look at the overall picture and to access the resources that they need."
All the pharmaceutical companies that produce disease-modifying medications for MS also offer nursing services to patients (see "Helpful Nursing Resources" on p. 31). These may include such services as toll-free hotlines staffed with registered nurses and in-home visits to train patients in the safe administration of medication and management of side effects. These nursing services were developed to assist the client and healthcare team in reducing side effects and increasing adherence to therapy.
The IOMSN has established certain criteria for its members to follow. It is a three-pronged approach that includes establishing care, continuing care, and sustaining care. All three are crucial in helping individuals with MS live well with the often unpredictable course of the disease.
Creating a Treatment Plan
The MS Nurse works side-by-side with the neurologist to create a treatment plan. "It's our job to recognize symptoms. The nurse should ask the patient: 'How are you doing? Are you better, worse, or the same as your last visit? How are you walking? Are you finding it difficult to climb the stairs?' By helping to identify these potential problems, nurses fulfill one of the most important roles in the care of the MS patient," says Halper. "By doing so they also acknowledge the patient as a person who has to deal with the disease."
MS Nurses are taught to ask the necessary questions and to order the necessary tests for common primary symptoms, including fatigue, depression, focal muscle weakness, ocular changes, bowel and bladder problems, sexual dysfunction, gait problems, spasticity, and paresthesias (numbness and tingling). Additionally, MS Nurses are knowledgeable about detecting less common symptoms, such as dysarthria (slurred or otherwise impaired speech), Lhermitte's sign (electric-like sensations caused by flexing the neck), neuritic (nerve) pain, vertigo, cognitive dysfunction, tremor, and loss of coordination. They must also be aware of rare symptoms, which include decreased hearing, convulsions, tinnitus (ringing in the ears), mental disturbance, and paralysis.
MS Nurses must know the different classifications of MS, how each type behaves, and how to best treat them. The different types of MS are: relapsing-remitting (RRMS); secondary-progressive (SPMS); primary-progressive (PPMS); and progressive-relapsing (PRMS). The goals of current therapies are to control relapses, delay disability, alleviate or modify symptoms, and to enhance quality of life. Current therapies at their disposal include anti-inflammatory agents, immunosuppressants, immunomodulators, symptom-management medications, rehabilitative services (such as physical therapy), counseling, and education.
Perrin Ross says that it can be very difficult for individuals who are newly-diagnosed to even consider taking disease-modifying or preventive medications. "They don't want to take medications that will possibly make them feel worse. They also hear all of these horror stories about the side effects of medications and aren't willing to consider injections, especially if they're young. They don't want to have red spots on their arms and legs which are visible reminders of the disease. They don't want them to be seen," she explains. "It's our job to help them understand the 'silent' aspects of the disease, such as lesions that develop during the time they're not on a preventive medicine."
Managing Symptoms and Side Effects
"Even when patients do agree to go on disease-modifying therapies," Perrin Ross adds, "it's difficult to get them to remain on the therapy, especially when they have the relapsing-remitting form of the disease. If their MS is in remission, they don't see the need to take the medication."
To reduce side effects from medication and to increase long-term adherence, Perrin Ross uses "dose titration," which is the practice of starting off with a one-quarter dose and slowly increasing to a full dose. This strategy was developed through the network of IOMSN nurses. "I often give non-steroidal anti-inflammatory medications (such as ibuprofen) or acetaminophen to reduce the flu-like symptoms associated with the interferons," says Perrin Ross. "I also stress the idea of injection-site rotation. If the injection site is moved, tenderness and swelling are less likely to occur."
MS Nurses regularly provide telephone support to patients concerning medication side effects or injection-site problems, but only to a certain extent. "Telephone support is very important, but if the patient calls more than twice about a particular problem, then they have to come into the office for treatment," says Halper. "It's very inappropriate to treat patients over the phone. For example, if a person has suicidal thoughts, how would you know that if you don't see the person?"
According to Halper, telephone support can best be given by nurses at an MS clinic or neurological practice for MS to clarify points discussed at a visit or to screen patients before a visit. "Additional telephone support should come from established organizations, such as the Multiple Sclerosis Association of America (MSAA) or the National Multiple Sclerosis Society (NMSS). There are also nurses from pharmaceutical companies that can answer questions or even visit patients when necessary," explains Halper.
To educate clients and their families about MS and its effect on their lives, MS Nurses distribute information from organizations such as MSAA and NMSS. They also encourage patients and their families to attend support groups. "For young people just diagnosed with MS, we also help counsel them about what it will be like to live with MS, especially if they are planning on having children and a career," says Perrin Ross. "It's so important to help families understand what patients are going through, especially if they're in remission. Although their loved one may be doing fine, they still have to understand that heat and fatigue management is key."
The MS Nurse must also be sure that the client is following the instructions for taking medications, exercising, reducing stress, getting enough sleep, and visiting his or her primary-care provider regularly. Moreover, it's the nurse's job to recognize if any outside factors, unrelated to MS, may be worsening symptoms — such as poor sleep causing fatigue, or caffeine and artificial sweeteners irritating the urinary tract.
The role of the MS Nurse also involves helping the severely disabled manage the disease. "They must have a primary-care physician to keep on top of their overall physical health. It's important to manage respiratory infections and to ensure that patients are having their PAP smears, mammograms, and other tests. This shouldn't be left up to the MS physician," says Perrin Ross. "Many patients blame everything on MS, but it's often their overall health that's problematic."
It's also important to encourage clients to continue their physical therapy or other rehabilitative therapy even when formal visits have stopped. "No insurance company pays for maintenance rehabilitative therapy with MS. Patients have to know the types of gains they are receiving from the therapy and to keep doing the exercises after the physical therapy ends," says Perrin Ross.
Complementary therapies, such as hippotherapy (therapy through horseback-riding), yoga, and aqua therapy (water exercises), have also been found to be beneficial to MS patients regardless of their level of disability. "Exercise helps physically but also mentally," says Perrin Ross. "Aqua therapy is especially good because it allows patients to move their muscles without the weight of gravity. They don't get too fatigued, so they get a good workout."
Advocating for the Patient
To ensure that the patient receives the support services needed, the MS Nurse must act as an advocate. "Our biggest role, and the role that takes the most time, is advocacy," stresses Halper. "Sometimes we're the voice for the patient when he or she doesn't realize that certain symptoms, such as loss of bladder control, are NOT acceptable. We explain that while a symptom is a part of MS, we can make it go away, or at least greatly help to reduce its effects."
In this role, MS Nurses spend a lot of time pre-certifying clients through insurance companies for care. "We spend a lot of time advocating for patients, helping to get approval from insurance companies for medications and to pay for another MRI," says Perrin Ross. "We also advocate for patients in the community and in the workplace. For example, getting the provisions of the Family and Medical Leave Act (FMLA) to apply for a patient's specific needs and making workplace accommodations."
Perrin Ross adds that at her center, if a patient needs to see a neuropsychologist, physical therapist, occupational therapist, speech therapist, nutritionist, or home-care aide, it's easy to arrange because they're on her staff. "It's more difficult in cases where patients are not treated at an MS center, but it can be done. It just takes more time to accomplish," she emphasizes.
Keeping a Positive Outlook
To promote optimism and hope, the IOMSN encourages MS Nurses to help patients find and define "MS-free zones" in their lives. An MS-free zone includes activities where MS does not need to play a role — such as socializing with friends and family; enjoying a good book, a movie, or attending a show; participating in gardening and other hobbies; and any other enjoyable activity where MS may be left behind. MS Nurses are also encouraged to: acknowledge the grief and loss accompanying MS; accentuate the positive; and tap into their spiritual side. To accomplish this, MS Nurses must establish a creative partnership with patients, one with an emphasis on positive outcomes by setting realistic goals.
"The uncertainty of MS is difficult. That is one reason why the rate of depression is so high with patients. We are striving to make the uncertainty more manageable for patients, but that's the toughest part of education," says Halper. "Often after their first relapse, patients feel hopeless and sad, wanting to give up. It's our challenge to continue advocating for them and to keep them hopeful."
About the Author
A former editor of The Motivator, Christine Norris is now a freelance writer specializing in health and wellness issues.
For Additional Information
Helpful Nursing Resources
Created and managed by the pharmaceutical companies that develop and market medications for MS, these support programs not only help patients learn how to properly administer therapy, but how to manage other issues related to the disease. All are staffed with nurses specially trained to deal with the uncertainties and unique aspects of MS. Their services include: information on financial reimbursement; on-line patient mentoring; nursing support, both on the phone and in the home; educational information; networking opportunities; and research news.
MS ActiveSource (Avonex®)
Phone: (800) 456-2255
Website: www.avonex.com,
www.msactivesource.com
MS Pathways (Betaseron®)
Phone: (800) 788-1467
Website: www.mspathways.com
(You must register first to take part in the 24-hour support service)
Shared Solutions (Copaxone®)
Phone: (800) 887-8100
Website: www.sharedsolutions.com
MS LifeLines (Novantrone®)
Phone: (877) 447-3243
Website: www.novantrone.com
MS LifeLines (Rebif®)
Phone: (877) 447-3243
Website: www.MSLifeLines.com
MS ActiveSource (Tysabri®)
Phone: (800) 456-2255
Website: www.tysabri.com
Other Helpful Sources
Multiple Sclerosis Association of America (MSAA)
Phone: (800) 532-7667
Website: www.msaa.com
Consortium of Multiple Sclerosis Centers (CMSC)
Phone: (201) 837-0727
Website: www.mscare.org
International Organization of Multiple Sclerosis Nurses (IOMSN)
Phone: (210) 837-0727, ext. 123
Website: www.IOMSN.org
E-mail: info@iomsn.org
Multiple Sclerosis Foundation
Phone: (888) 673-6287
Website: www.msfacts.org
National Multiple Sclerosis Society
Phone: (800) 344-4867
Website: www.nmss.org
