Introduction: adherence to disease-modifying therapies--key to optimizing outcomes in relapsing multiple sclerosis.
(Care and treatment)
Patient compliance (Management)
Outcome and process assessment (Health Care) (Management)
Kay, Jonathan M.
|Publication:||Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2010 American Association of Neuroscience Nurses ISSN: 0888-0395|
|Issue:||Date: Oct, 2010 Source Volume: 42 Source Issue: 5|
|Topic:||Event Code: 200 Management dynamics Computer Subject: Company business management|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
The introduction of disease-modifying therapies (DMTs) in the early
1990s profoundly changed the treatment of multiple sclerosis (MS).
Before the advent of DMTs, few therapeutic options were available, and
none was capable of altering the course of the disease (Lim &
Constantinescu, 2010). Most patients diagnosed with MS faced the
prospect of becoming wheelchair bound within a decade. Moreover, the
likelihood of ongoing neurological deterioration portended a poor
quality of life and a shortened life expectancy. Now, however, patients
with relapsing forms of MS have access to DMTs that can significantly
reduce the frequency and severity of clinical attacks, decrease the
appearance of new symptoms, and slow the rate of disability progression
(Lim & Constantinescu, 2010). Magnetic resonance imaging (MRI)
studies have confirmed that these agents reduce the accumulation of
damaged or active areas of disease (i.e., lesions or plaques) in the
brain and spinal cord.
In the United States, the DMTs approved for the treatment of relapsing-remitting MS (RRMS) are subcutaneous (SC) interferon (IFN) [beta]-1a (Rebif, 2009), intramuscular (IM) IFN [beta]-1a (Avonex, 2008), SC IFN [beta]-1b (Betaseron, 2008; Extavia, 2009), SC glatiramer acetate (Copaxone, 2009), intravenous (IV) natalizumab (Tysabri, 2008), and IV mitoxantrone (Novantrone, 2008). (Note that natalizumab is administered under a stringent protocol and monitoring program because it has been linked to the development of progressive multifocal leukoencephalopathy, a potentially fatal brain disease). Although all the DMTs are indicated for RRMS, only IM IFN [beta]-1a, IFN [beta]-1b, and glatiramer acetate are approved for patients who have experienced an initial clinical episode and have MRI features consistent with MS, a condition known as clinically isolated syndrome (Avonex, 2008; Betaseron, 2008; Copaxone, 2009; Extavia, 2009). In addition, mitoxantrone is indicated for use in secondary-progressive MS (Novantrone, 2008). No DMT has yet been approved for primary-progressive MS.
Despite the well-documented efficacy of DMTs in RRMS, the full benefits of these agents cannot be realized without long-term adherence to recommended regimens. Comprehensive management of MS requires the collaboration of professionals from different healthcare disciplines who can work with patients and caregivers to overcome the various obstacles to adherence.
This supplement reflects the proceedings of a summit that was convened in Philadelphia, Pennsylvania, on August 22, 2009, with the goal of identifying practical strategies for encouraging proper adherence to DMTs. The participants included 3 neurologists, 2 nurse practitioners, a nurse, and a clinical psychologist, reflecting the multidisciplinary nature of MS care. The first article provides a review of the existing data on adherence. The second article focuses on factors that can influence patient adherence to DMTs, such as the level of family support, lifestyle stability, and the presence of depression. Also addressed are methods of maintaining adherence through constant educational reinforcement and involvement of care partners. The third article describes opportunities for education and advocacy that can positively influence adherence. Subjects such as risk-benefit analyses, work-related problems, and cognitive issues are discussed.
Understanding the Pathophysiology of MS To fully appreciate the dynamics involved in adherence to MS therapy, one must first understand the impact of the disease itself. MS is a chronic neurologic illness characterized by damage to the myelin sheaths that protect long fibers, called axons, in the brain and spinal cord. The axons are responsible for carrying the electrical signals by which nerve cells communicate. When the insulating sheaths are damaged (demyelinated), the axons are no longer able to conduct signals effectively, resulting in impairments related to sensation, movement, and cognition, among other functions.
Although the exact causes of MS remain unknown, both autoimmune and neurodegenerative mechanisms have been identified. An abnormal autoimmune response may result from factors such as exposure to an environmental agent (e.g., a virus) in genetically predisposed individuals. Once the immune system is triggered, activated lymphocytes (white blood cells) migrate across the blood-brain barrier and into the central nervous system (CNS). These lymphocytes interact with other cells inside the CNS and stimulate the production of inflammatory cytokines that break down the blood-brain barrier. The combined effects of this autoimmune response are demyelination, axonal damage, and formation of lesions. Axonal degeneration may begin early in the course of the disease and can lead to permanent neurological dysfunction. Brain atrophy may also occur early and is believed to reflect irreversible tissue damage. Disability results from permanent and irreversible axonal loss throughout the CNS.
Diagnosis of MS
Unpredictability is the rule in MS with respect to the disease course, type and severity of symptoms experienced by individual patients, and long-term outcomes. This heterogeneous nature can make the diagnosis of MS challenging.
An estimated 400,000 people in the United States have MS. Onset of the disease usually occurs in early adulthood but can also occur during childhood. Women are more than twice as likely as men to be diagnosed with MS, and this gender trend may increase over time. Common symptoms (which may be mild, moderate, or severe) include fatigue, sensory or visual disturbances, weakness, bowel and bladder problems, and pain. Symptoms such as vertigo, tremor, speech difficulties, depression, cognitive changes, and sexual dysfunction may also be present. The symptoms of MS may appear as an acute attack (also known as an exacerbation or relapse) or may become chronic, with clinical and functional deterioration marking disease progression. Although MS is seldom fatal today, it continues to carry the threat of severe disability, with approximately one third of patients requiring ambulatory assistance within 10 years of diagnosis (Pittock, Maye, & McClelland, 2004).
In the past, months or even years could pass between the actual onset of disease and the time MS was diagnosed on the basis of clinical symptoms alone. Today, however, the diagnosis is facilitated by the combined use of clinical observations, neuroimaging data, and sometimes laboratory tests. Criteria have been established for confirming the diagnosis on the basis of objective clinical evidence alone in some cases, the addition of MRI findings demonstrating dissemination of MS lesions in space or time in other cases, and further testing of evoked potentials and the cerebrospinal fluid in still other cases (Polman et al., 2005).
Advances in the ability to diagnose MS have paved the way toward improving outcomes through the timely initiation of DMTs. Nevertheless, the degree of long-term benefit to be derived from these therapies depends heavily on adherence to treatment schedules.
Factors Affecting Adherence to DMTs
Although oral DMTs are under investigation, all the currently available agents must be administered parenterally. In the case of self-injected agents (IFN-[beta] therapies and glatiramer acetate), patients or their caregivers must assume responsibility for adhering to the prescribed frequency of administration. The need to administer these therapies daily or multiple times per week can be a considerable obstacle to proper adherence. Patients may fear needles, tire of the inconvenience of injections, or have difficulty administering their injections. Furthermore, DMTs are commonly associated with side effects such as injection-site reactions, flu-like symptoms, and increased likelihood of depression, which can further discourage patients from adhering to a treatment that does not offer immediate benefits. Even mild bouts of these side effects may have a tremendous impact on adherence.
Nurses and nurse practitioners can play an especially important role in helping patients to understand the risks and benefits of each DMT and to recognize the value of adhering to injection schedules. Nurses can be vital sources of practical information concerning the indications, effectiveness, and side effects of therapy, thereby facilitating patients' treatment decisions and ensuring proper use of these medications.
Recent advances in disease modification have changed the landscape of long-term MS care and have offered patients the prospect of a better future. It is hoped that the information offered in this supplement will encourage nurses to assume a proactive role in optimizing adherence to DMTs among patients with RRMS.
Living With MS: Patient and Care Partner Perspectives
A highlight of the summit was the opportunity to hear perspectives on multiple sclerosis (MS) from a patient, Karolyn Davis (diagnosed with relapsing-remitting MS in 2002), and her husband and care partner, Alan Davis.
A diagnosis of multiple sclerosis (MS) can give rise to a variety of (often conflicting) emotions in patients, including fear, hope, guilt, and confusion. Soon after the diagnosis, some people with MS quickly adopt the attitude of becoming proactive with respect to their treatment. These individuals express interest in forming a productive partnership with their clinician, wherein the clinician explains the nature of the disease and offers different treatment options, but the patient ultimately decides on the course of therapy. However, the motivation to become involved in treatment decisions appears to vary widely among people with MS. Some individuals prefer not to learn about the particulars of disease progression and want to leave the selection of treatment to their clinician. Regardless of where someone falls on this spectrum, nurses can play a pivotal role by helping people with MS address the issues of daily life and by making sure that the clinician is well informed concerning a patient's status.
Because of the chronic nature of MS and the unexpected course of the disease, it is important for people riving with MS to be aware of the various situations that may arise. Among the various negative aspects of MS, uncertainty concerning the future is particularly distressing. Although a relapse can occur at any time, trying not to dwell on it, making plans--even long-term plans--and hoping for the best can be ways to cope with the uncertainty. Those with MS can best prepare for future challenges by maintaining or improving their well-being in multiple domains, including nutrition and emotional support, and by addressing concerns such as finances and health coverage.
Although no clinical studies have shown that certain foods worsen or improve the course of MS, many find that their symptoms seem to be aggravated by certain foods. Recommendations for healthy eating habits may differ from person to person, but a diet rich in whole grains, fresh fruit, and vegetables is a good starting point. People with MS frequently find that their strength wavers throughout the day. Planning frequent healthy, filling meals and snacks can help stave off fatigue and maintain higher levels of energy for longer durations.
The importance of exercise for people with MS is just beginning to be appreciated. Many find that yoga can help reduce pain, spasms, and fatigue and can even elevate mood. Water aerobics is one of the best and most popular exercises for MS patients because of reduced stress and force on the muscles. One should look for classes that are appropriate to his or her skill level and, if possible, are conducted by professionals in neurorehabilitation.
In addition, people with MS are often sensitive to fluctuations in temperature. Most patients are sensitive to heat, but others are sensitive to cold. Such sensitivities can be problematic, especially during exercise, when heat regulation is difficult to control. Although body temperature naturally fluctuates throughout the day, people with MS must pay special attention to such changes because overheating can induce symptoms of the disease. Thus, it is wise to exercise in well-ventilated environments, take breaks whenever necessary, drink plenty of water to remain hydrated, and stay within one's physical limitations.
Fatigue is a disabling MS symptom that can have both physical and mental manifestations. Some people with MS who have physical or motor fatigue find that midday naps are helpful. In addition, some individuals find that physical fatigue and mental stress can be moderated by organizing their day such that more strenuous activities are scheduled for times when energy is likely to be at its peak. The anticipation of administering a self-injection of a medication at home and possibly dealing with postinjection side effects may also cause mental stress. When feeling too tired or stressed to self-inject, merely the encouragement of a spouse or a care partner is enough to remember the importance of adhering to a medication regimen.
More severe psychiatric symptoms, such as anxiety or clinical depression, likewise affect patients with MS and may signal the need to consult a mental health professional, whether a psychologist, psychiatrist, therapist, counselor, or social worker. Although anxiety, depression, and other psychological issues have neurobiological bases and may lessen with psychiatric medications, people with MS often find that examining individual stressors with a mental health professional can also impart considerable therapeutic benefit.
Many with MS find strength in spiritual and/or religious beliefs. Merely feeling that one is not alone in facing the trials of living with a chronic disease can be comforting, and support groups can help reduce feelings of loneliness and helplessness. Patients also draw emotional strength through bonds with family and friends. Although personal relationships may initially be strained after a diagnosis of MS, these same relationships can grow stronger over time, as trust and honesty develop between the person with MS and care partners, spouses, friends, and so forth: My husband is my partner, but he is also my caregiver, and I am getting better at accepting his help. In some ways, I think the illness has brought us closer together; we have become good companions.
Time is an extremely important commodity in caring for someone with MS. Sometimes, caregivers are not interested in investing the time necessary to understand MS--a reluctance that undermines communication and the prospects for a healthy, trusting relationship. Some family members or other significant people in the patient's life resent being asked to help with the many demands of MS care. However, given time and proper education by healthcare professionals such as nurses, these individuals can come to see these same responsibilities in a different light. Potential care partners need some time to adjust, and often explanations of the disease, the treatments, and the long-term care methods need to be provided more than once.
Finding a balance between maintaining one's independence and asking for help is a personal journey for each person with MS. With a dedicated care partner, however, the person with MS can be reassured that someone is available to assist with any issues that may arise. Knowing that the disease is manageable can increase coping levels, feelings of stability, adherence to therapy, and overall health. Care partners can help in a multitude of ways, including doing errands, cleaning the house, making doctors' appointments, and helping to keep track of treatment schedules.
Care partners can play a vital role in informing family, friends, and work colleagues about the patient's illness. Many people with MS find that a degree of worry and stress can be lifted by having their condition disclosed to important people in their lives.
Commitment to Adherence
People with MS and their care partners have the ultimate responsibility for assuring adherence to recommended treatments for MS. Dedication to adherence can have a profoundly positive impact on long-term outcomes. Healthcare professionals can facilitate this process by assuring that patients and caregivers address key issues that may, at first glance, seem only tangentially related to adherence, such as nutrition, exercise, support, and faith, which together can promote a better quality of life and strengthen the commitment to ongoing therapy.
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Questions or comments about this article may be directed to Christina Caon, MSN NP-C, at firstname.lastname@example.org. She is an assistant director of clinical research at the Multiple Sclerosis Center at Wayne State University School of Medicine, Detroit, MI.
Carol Saunders, RN MSCN, is in private practice in Oceanside, CA.
Jennifer Smrtka, ANP-BC MSCN, is a board certified adult nurse practitioner and an IOMSN certified MS Nurse at the Ft. Lauderdale MS Center, Pompano Beach, FL.
Karolyn Davis is an MS patient in Canton, MI.
Alan Davis is an MS care partner in Canton, MI.
Jonathan M. Kay, Expert Medical Education, Washington, DC.
Nancy Baxter, Expert Medical Education, Washington, DC.
This supplement was supported by a grant from Teva Neuroscience. Expert Medical Education contributed to the editorial refinement of this article and to the production of this supplement. Authors may have accepted honoraria for their supplement contributions.
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