A Helping Hand
Nurses play an increasingly important role in MS Care
By Christine Norris
Reviewed by Jack Burks, MD
Individuals living with multiple sclerosis share the common goal of achieving the highest quality of life possible. Receiving proper care, guidance, and support, is essential to reaching such a goal. Over the years, nurses that specialize in MS have played an increasingly vital role in helping individuals adhere to therapy, often the key to a patient's health and well-being. In addition to providing education and support to those receiving treatment, these professionals give day-to-day care and advice to MS patients at a time when many doctors are hampered by time constraints.
"With managed care, doctors have less time to spend with patients. We play a vital role in helping the person understand the disease and why adhering to treatment is necessary," says Carol Saunders, BSN and an MS Certified Nurse (MSCN) with the MS Center at the Neurology Center Fairfax, located in Fairfax, Virginia. "Nurses also look at the whole person, not just symptoms. We look at how MS impacts their lives. They depend on us. We answer their questions. We help them better understand their options."
Dorothea (Dottie) Cassidy Pfohl, BS, MSCN, is a nurse with the Department of Neurology at the Hospital of the University of Pennsylvania's Comprehensive MS Center. She believes that her role has become increasingly important. "MS nurses have the good fortune of having set some precedents. We have long enjoyed a collegial relationship with our doctors; but now, with medications on the market which can alter the natural history of MS, they depend on us to properly prepare patients to adhere to therapy," she notes.
"You can train most people to give an injection. The mechanics of it are not difficult," Pfohl continues. "Guiding the person through the whole process is what's important. Helping the individual understand the rationale behind the medication, the importance of therapy, and the way that therapy can fit into his or her life, is of great assistance to the person we are caring for. It's similar to the difference between being told you should exercise, and someone inspiring you with the importance and value of exercise -- so it becomes something that you want to do."
To earn the designation, "MSCN" (MS Certified Nurse) from the International Organization of Multiple Sclerosis Nurses (IOMSN), nurses must have experience in caring for MS patients for at least two years and pass a comprehensive exam. IOMSN has approximately 1,000 MS-certified nurses from around the world. In addition to helping nurses obtain their MSCN certification, 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." The Consortium of MS Centers (CMSC) also provides education and support to its growing roster of MS professionals.
"You definitely need a special skill set to become an MS nurse," says Pfohl. "You could be the most skillful acute-care nurse, or have a wonderful knowledge of pharmacology, and still struggle with the diverse background which is essential to being an MS nurse. You need to have a broad base of knowledge and experience to work effectively with all of the different facets of patient care."
The pharmaceutical companies that provide medications for MS also offer nursing services to patients. (See "Helpful Nursing Resources" on p. 26.) From toll-free hotlines staffed with registered nurses, to in-home visits to train patients in the safe administration of medication, as well as the management of side effects, these nursing services were developed to assist the patient and healthcare team in increasing adherence to therapy.
"This support from the drug companies is crucial," says Saunders, who has been involved in training some of these nurses. "Although some of the drug companies use nursing agencies for staff, others train a dedicated team of nurses to provide support, in-home training, and education for MS patients. They're sent on two-week training sessions to learn about the particular medications and issues surrounding MS patient care. They go out into the field, and they're very well trained."
Saunders adds, "These nurses are not in every city, but they're in a lot of the larger cities. Not only will the nurse from the pharmaceutical company teach patients how to properly inject or take the medicine, but she or he will also check back with them in a month or so and send a report to the healthcare team. This gives us the advantage of knowing about the home situation first-hand."
According to Saunders, these nurses who are employed by the pharmaceutical companies also provide a safety net for patients who go to doctors without a registered nurse on staff. "People need to have their questions answered. These nurses provide a much needed service," she says.
"The field nurses are encouraged to maintain the relationship with the patient and to liaison with the doctor and MS nurse," adds Pfohl. "They're my eyes and ears, and on occasion, have alerted me to nursing issues - allowing me to better meet the needs of the individuals and/or their families."
"'Adherence to therapy' are the new buzzwords in MS circles today," says MSAA Vice President and Chief Medical Officer Jack Burks, MD. Dr Burks is also a clinical professor of medicine in neurology at the University of Nevada's School of Medicine and the founder of the Rocky Mountain MS Center in Colorado. "With the MS medications, adherence is essential, and nurses are the key to adherence. Also, more and more of the day-to-day care of MS patients is in the hands of nurses and not physicians in practice settings. These nurses are experts in providing education and going the extra step for patient support."
Supporting the Patient
That "extra step" often involves "thinking like a social worker" says Pfohl, to ensure that the patient has all of the support he or she needs. This may mean contacting non-profit organizations such as MSAA, or consulting community services to locate a neuropsychologist, physical therapist, occupational therapist, home-care help, etc. when needed. A multi-disciplinary team approach is the hallmark of comprehensive care.
In her role as MS nurse, Saunders also runs three support groups for patients: one for the newly-diagnosed, one for individuals with relapsing-remitting MS, and one for family members. "Family support is a very important factor, especially in cases where the patient has cognitive problems and may not remember to take the medication without help," she says.
Saunders and Pfohl are working with a pharmaceutical company on a research project called, "The Partnership Study." Begun in February of 2006, this investigative study hopes to obtain 100 high-risk patients to see if the MS nurse in the doctor's office or MS center, and the RN at the pharmaceutical company support line, working together, can increase the rate of adherence to medication during the first 90 days. This is when a large percentage of individuals tend to stop treatment.
"We want to measure whether a specific nurse from the drug company, and the nurse in the office, working together, can keep the patient on the drug longer," explains Saunders. "The pharmaceutical companies need to launch more research projects like this one to measure the difference nurses make in adherence to therapy." She also hopes that the results from the study will help convince more neurologists and other doctors who work with MS patients to hire an RN for their staff.
Improving Adherence to Therapy
Despite the fact that early treatment for MS is essential in an effort to avoid or delay potentially irreversible neurological damage, only 50 percent of all MS patients in the United States and 60 percent of those with relapsing-remitting MS (RRMS), are using disease-modifying therapy. Of that number, between 12 and 25 percent will discontinue treatment or may drop out completely [Mohr, et al].
A recent study of patient perspectives on deciding to begin and to adhere to disease-modifying therapy (DMT), conducted by researchers from the Department of Rehabilitation Medicine at the School of Medicine, University of Washington, Seattle, was published in the Spring 2006 issue of the International Journal of MS Care. To follow are some of the main points from this study.
The difficulties and main concerns associated with DMT reported in the article were:
- financial cost and insurance
- denial and fear
- difficulty giving self-injections or having a family member give the injection
- uncertain outcome
The main reasons for choosing not to undergo DMT or to discontinue use were:
- dislike of needles
- not being "sick enough"
- fear of side effects
- cost versus benefit
- discouragement from physicians who don't strongly support early treatment
The authors of the study, however, believe that these barriers will be reduced by recent advances in clinical practice. The training of nurses specializing in MS as well as improved coverage for treatment costs are particularly significant to overcoming such barriers.
Another study by researchers at the University of California, San Francisco, was published in the Archives of Neurology. It found that treatment for depression improves adherence to inferferon beta-1b therapy for multiple sclerosis.
"We have to monitor patients for depression because many people with MS are depressed, and in some cases the therapy can worsen depression," says Saunders. "In many cases there are also cognitive problems, so we must educate a family member to give the medication when it should be given."
Pfohl believes that for a patient to adhere to therapy, the timing must be right. "If someone is newly diagnosed, they have a lot to absorb. To rush the patient immediately into therapy isn't going to work. It's often better to send him or her home to process the information and then have the person get back to you with questions," she notes.
Pfohl adds that it's crucial to get patients off to a good start with medication. She states, "Studies show that if patients stop taking one medication or can't tolerate one, they're more likely to have a suboptimal experience with another medication. The challenge is that the drugs are expensive. They usually don't make you feel better; they may make you feel worse, and often you can't tell that they're working. Additionally, people can quit without an immediate, noticeable impact. It's not like a person with diabetes who gets sick if the medication is not taken."
Dr. Burks concludes, "Despite the reasons that prevent some individuals from taking a disease-modifying therapy for MS, those people who stay on these long-term medications typically do quite well. This is great news for the MS community. Along with other medical professionals, we need to do all that we can to help patients continue with their therapy, and this is just one reason why the nurse's role is so important. We're seeing less disability and longer periods without disease flare-ups - but the drugs cannot work if they are not being used.
"The important thing is for individuals with MS to find the right disease-modifying therapy for them and to stay on the medication. Usually only minor glitches occur with treatment, and these can be easily remedied with various strategies - another important function of the MS nurse. And staying on the long-term medication will maximize an individual's chances for having a brighter future."
With clinical knowledge, compassion, and patience, MS nurses are helping to improve adherence to therapy. With a helping hand, they dispense much more than training and education; they convey hope and encouragement to those they touch.
About the Author
A former editor of The Motivator, Christine Norris is now a freelance writer specializing in health and wellness issues.
Research Sources
Hadjimichael O, Vollmer TL. Adherence to injection therapy in multiple sclerosis: patient survey [abstract]. Neurology. 1999; 52 (suppl 2):A549.
Johnson, Kurt L PhD; Kuehn, Carrie M MPH; Yorkston, Kathryn M PhD; Kraft, George H MD; Klasner, Estelle, PhD; Amtmann, Dagmar PhD. Patient perspectives on disease-modifying therapy in multiple sclerosis. International Journal of MS Care. Spring 2006; 11-18.
Mohr DC, Boudewyn AC, Likosky W, Levine E, Goodkin DE. Injectable medication for the treatment of multiple sclerosis: the influence of self-efficacy expectations and injection anxiety on adherence and ability to self-inject. Ann Behav Med. 2001; 23(2): 125-132.
Mohr DC, Goodkin DE, Likosky W, Gatto N, Baumann KA, Rudick RA. Treatment for depression improves adherence to interferon beta-1b therapy for multiple sclerosis. Arch Neurol. 1997 May; 54(5): 531-3.
