Multiple sclerosis (MS) is a complex, chronic, lifelong condition of adults that has a widespread impact on the patient, family, and society at large. Health care in MS requires the knowledge and skills of numerous medical and related professionals in a variety of health care settings: private practices, MS centers, rehabilitation settings, day treatment programs, and extended care facilities.

The nursing professional is often a key member of the MS health care team that includes physicians, rehabilitation specialists, mental health professionals, and patient advocates.¹ This model of comprehensive care may occur in MS centers or in centers without walls because care varies throughout the United States and throughout the world. However, in facilities where there is a nursing professional, patient contact usually places the nursing professional as a key player in this system.

The nurse is ideally prepared to make periodic assessments in person or via other means of contact (phone, email) and is in an ideal position
to identify problems when subtle changes in MS symptoms may occur. Changes in bowel or bladder function, mobility, swallowing, or vision may portend overall problems with the patient’s function or safety. Psychological and cognitive assessments are also within the nurse’s scope of practice. It is well known that patients with MS are at an increased risk of depression and suicide, so screenings are essential. Cognitive changes, such as short-term memory loss or slowed information processing, may be misinterpreted by the family as stubbornness and irritability.² Because of the chronic and long-term nature of MS, it is crucial for the patient and family to be involved in the management of the disease and to consider themselves part of the health care team (see Figure 34.1). The nurse can explain and educate why changes occur and promote understanding and adjustment to these challenges.

Although the diagnosis of MS is a clinical one, it involves the expertise of a neurologist who is familiar with MS and the newer diagnostic criteria, which were updated in 2017.³ The patient must undergo a series of tests, including neuroimaging (magnetic resonance imaging) and laboratory testing (blood work and possible spinal fluid analysis), to rule out conditions that mimic the disease. This process may be prolonged owing to the need for third-party approval for the costs of the tests (prior authorization), scheduling, patient preparation, and other issues such as the need for transportation. The nurse functions as a facilitator, educator, and advocate during this process, ensuring that the tests ordered are completed, educating the patient and family as to why the tests are needed and what the results will tell the clinician, and advocating for insurance approval and reimbursement for the testing.⁴

Subsequently, once the testing is complete and the patient is given the results (should the patient be given the diagnosis of MS or another condition), the nurse’s role is one of support and education. Please note that the importance of just “being there” cannot be underestimated. Reassurance and comfort are sometimes all that are required during the early phase of the diagnostic period. Once the realization has set in, patients and families need education about MS, particularly information relevant to the person with MS, not generalities. Sometimes, patients do not want in-depth information. Others want specifics. Tailoring education to the patient’s needs, ethnocultural background, and specific for the time and place is a skill that nurses acquire over many years. Establishing a trusting relationship with open lines of communication is vital during the diagnostic phase and will carry over into subsequent interactions.

Management strategies for MS fall into three general categories: treatment of relapses caused by the underlying disease; prevention of progression or reduction of the frequency of relapses; and control of symptoms that affect the total patient, affect his or her quality of life, and influence the disease itself. Until the early 1990s, symptomatic care, rehabilitation services, and mental health interventions were the best that health care could offer those affected by MS. The entry of injectable therapies in the latter part of the 20th century, followed by infusible medications and subsequently by oral treatments, heralded a new era in the pharmacologic and nonpharmacologic approach to MS. Consequently, nursing responsibilities have expanded exponentially. Nursing care in MS falls into four general categories: relapse management, ongoing assessment and interventions, sustaining adherence, and contributing to the patient’s and family’s health-related quality of life.⁵

A relapse or an exacerbation is unpredictable as to when it may occur and how it can manifest itself. It may involve a variety of symptoms, including abrupt changes in sensation, pain, cognition, coordination, bladder control, balance, strength, or vision. Treatment of a relapse is disruptive itself, and nursing support can ease a patient’s anxiety. Education, reassurance, and coaching through the treatment process may ease the uncertainty and renewed concerns that reoccur during this period because, even in a clinically stable patient, a relapse is a powerful reminder of the presence
of an “unwelcome guest,” MS. Nursing professionals must help patients cope with a variety of challenges: dosing schedule, side effects, possible loss of income, costs of care, and additional health care needs such as rehabilitation, use of assistive devices, and the uncertainty about the extent of recovery. Like a pebble dropped in a pond, the effects of a relapse reverberate to affect the patient’s family, friends, and vocational and social work, so the nurse’s role may extend beyond the patient to educate others should the patient need that assistance.⁶

MS has a widespread impact on a person’s activities of daily living and his or her quality of life. The nursing professional has a complex role in addressing those issues in each interaction with the patient and family. In this author’s experience, it is valuable to utilize the nursing process to ascertain the impact of MS on the patient’s activities of daily living. By doing so, one can determine if the primary symptoms of MS (weakness, fatigue, tremor, pain, elimination dysfunction, speech and language problems, visual disturbance, and mood disorders) are affecting activities of daily living as well as a person’s functional status. Then, in collaboration with the patient, the nurse can prioritize a plan of care to address those issues of greatest importance. For example, although elimination dysfunction may be a nursing concern, the patient’s priority may be on changing roles and relationships with family and friends. Counseling, referrals to appropriate services, and education may be effective strategies in addressing issues related to these types of interpersonal challenges.

Comprehensive nursing management may include the following:

1. Improving elimination patterns and preventing infections and incontinence

2. Modifying sleep and rest patterns and reducing fatigue

3. Addressing and treating sensory symptoms such as dysesthesias and pain

4. Assessing for risks such as falls, contractures, and skin breakdown and instituting preventive measures

5. Working with rehabilitation specialists to maximize function and minimize risks

6. Counseling and educating patients and referrals to mental health care when indicated to improve coping skills and attain maximal quality of life

7. Referrals for and coordination to community care services such as home nursing care, social services, and other supportive programs (meals on wheels, food stamps, day care, to name a few)

8. Initiating and coordinating necessary testing required throughout the course of the disease (neuroimaging, laboratory studies, special tests for cognition, etc.)

9. Assessing and treating complications such as infected wounds and skin breakdown

10. Working with agencies and service organizations to obtain needed services and support for patients and families⁷

Sustaining patient adherence to MS treatments, pharmacologic and nonpharmacologic, is an ongoing challenge to nursing professionals. Helping patients to maintain a realistic outlook and working on an individualized plan of care for each patient is one approach that helps improve adherence and optimize therapeutic outcomes. It is usually a nurse who has a partnership with the patient from the time of diagnosis throughout the journey with this lifelong disease. Adherence to therapy starts at this point and continues throughout the course of the disease with the adoption of new tasks such as self-injection, having regular blood work, scheduling infusion therapies, working with a rehabilitation team, undergoing diagnostic procedures, or facing changes in functioning. An open and honest relationship and free communication between the nurse and patient can promote adherence to new behaviors required for successful management of MS.⁸

Because MS usually strikes during the most financially productive years of life, employment issues are usually of high importance to patients and families. Fatigue, increasing disability, and the unpredictable nature of the disease represent major obstacles to continued employment. Nevertheless, people with MS should be encouraged to work if possible, because the ability to remain productive is a strong deterrent to depression.

The very high frequency of depression should be a red flag for nursing professionals. It is important to assess patients at each encounter for signs and symptoms of mood change. Similarly, cognitive changes can invade every aspect of a person’s life. MS nursing professionals need to ask the right questions to delve into the problems and, together with the patient, plan for the correct assessments and interventions. Psychological counseling, support groups, and advocacy by MS professionals are essential throughout a lifetime with MS.⁹