Role of Advanced Practice Nurse in Management of Multiple Sclerosis June Halper, MSCN, ANP, FAAN The introduction of disease-modifying therapies and the realization that multiple sclerosis (MS) is a treatable disease has seen the emergence of an expanded role for advanced practice nurses (APNs) in the MS arena. Within MS centers, clinics, inpatient settings, and private practices, APNs may function as one or more of the following: administrator, consultant, researcher, advocate, and clinician. Because of the significant roles APNs play in the management of patients with MS, they must embody a core set of competencies delineated by domains specific to MS care. As MS care continues to evolve, APNs remain at the forefront of the multidisciplinary team of health professionals dedicated to optimizing outcomes through research, education, and the identification and implementation of best practices. Int J MS Care. 2006;8:33–38. outcome. APNs typically fill several roles within an MS center, clinic, inpatient setting, or private practice, including administrator, consultant, researcher, advocate, and clinician. These roles are derived and adapted from models of advanced practice nursing, developed in the 1980s and 1990s. Because APNs can have a significant effect on the well-being of patients with MS, they must embody a core set of competencies delineated by domains specific to MS care. This article, based on a previously published MS APN monograph, defines the roles and domains of MS APNs in the context of their overall goal of maximizing outcomes for patients with MS and their families.1 The emergence of an MS nursing team marks a new era in specialty care worldwide.

ultiple sclerosis (MS) has evolved from a perplexing, frequently disabling, long-term chronic neurological disease to a manageable and treatable condition. For many years, management consisted of relapse care, symptomatic therapies, and supportive education and counseling. Patients were diagnosed and treated by a neurologist with sporadic care by urologists, rehabilitation specialists, orthopedists, and occasionally nurses. The vision of MS was dim; its diagnosis implied a downhill road to disability. Most nursing contact was during home care for management of complications such as decubitus ulcers and infections or in long-term care facilities, where those with advanced MS were forced to reside when their care needs exceeded family and community resources. During the latter part of the 20th century, the vision of MS changed to one of new insight into the complexity of the disease, research into effective therapies, comprehensive care, earlier diagnosis and treatment, and alteration in its natural history. A better understanding of the pathophysiology of MS has led to the availability of disease-modifying agents and better symptomatic care, with an emphasis on rehabilitation programs and systems facilitating wellness. The growing array of treatment options and management strategies have resulted in advanced practice nurses (APNs: nurse practitioners, clinical nurse specialists) becoming pivotal members of the MS health care team. In a chronic disease with a variable course such as MS, patient care can be complex. The specialized knowledge and skills of APNs contribute to structuring management plans that synthesize evidencebased practices and hands-on experience to ensure an optimal

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Evolution of MS Nursing as Specialty Advances in the treatment of MS over the past decade have led to the need for highly skilled nurses equipped to meet the health care, educational, spiritual, and psychosocial needs of patients across the continuum of the disease course. The expanding responsibilities of MS nurses dictated new roles and more intense specialization. The MS nurse has been defined as a competent expert who collaborates with those affected by MS and shares knowledge, strength, and hope. As the role of nurses continues to evolve, a cohesive model of MS nursing practice, along with specific standards for best practice in MS nursing care, needs to be established. Nursing practice aims to both manage and influence the patient’s illness by supporting disease-modifying treatments; facilitating symptoms management; promoting safe, maximal function; and supporting a wellness-oriented quality of life. Activities that are essential to patient care have been defined as • Establishing care • Continuing care • Sustaining care

The author is Executive Director of the Consortium for Multiple Sclerosis Centers, the Gimbel MS Center, and the International Organization of Multiple Sclerosis Nurses, Teaneck, New Jersey.

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Together, these interwoven areas are a framework for a comprehensive, cohesive model for MS nursing practice that can be applied to care of all MS patients, regardless of disease classification or level of disability.2 This definition of MS nurse has been accepted worldwide, and many nursing groups have adopted this model. In 1997, the International Organization of Multiple Sclerosis Nurses (IOMSN) was founded to establish this specialized branch of nursing and support MS nurses in their research, clinical, and educational efforts. Subsequently, an international certification board was established, and the first MS nursing certification examination was held in 2002. As of early 2005, IOMSN had approximately 1000 worldwide members, 450 of whom are certified in MS nursing. The certification examination validates the knowledge and experience of nurses who have chosen to specialize in MS. Many nurses have either entered the field of MS as APNs or have continued their education to attain advanced degrees such as a master’s degree or doctorate. This cadre of MS nurses has altered the spectrum of care considerably, and particular characteristics have been identified as the bulwark of this MS nursing subspecialty.2,3

• Providing patient advocacy by sensitizing staff to patient dilemmas • Interpreting the role of nursing to others Another model that is widely cited is the Strong Model of Advanced Practice, which defines and identifies five domains of advanced practice and describes the activities in each domain.6 The unifying features of the Strong Model are the concepts of collaboration, scholarship, and empowerment. A contrasting model, described by Brown (1998), 7 embraces a broad comprehensive conceptual framework for advanced practice nursing to guide the development of curricula, determine role description and practice agreements, and provide direction for research. It consolidates and integrates the defining elements, competencies, characteristics, outcomes, and multiple contexts of nursing into a comprehensive framework. Key features are a holistic perspective, partnership with patients, use of expert clinical reasoning, and diverse approaches to patient management. The proposed definition of the MS APN incorporates features from all of the models and has emerged as a unique definition developed by a consensus group of MS APNs.

Models of Advanced Practice Nursing

MS APN Attributes

Numerous conceptual frameworks in the literature are models of advanced practice nursing. These models highlight how APNs differ from registered nurses who do not have advanced training. The first of these, published in 1984 by Benner,4 continues to guide the development of nurse competency. Benner’s model identified seven domains that provide direction for APNs: • Helping • Teaching and coaching • Diagnostic and patient monitoring • Effective management of rapidly changing situations • Administering and monitoring therapeutic interventions and regimens • Monitoring and ensuring quality of health care practices • Organizational and work-role competencies

APNs are essential in caring for people with many chronic medical, surgical, and neurological conditions. Generally, and in the MS arena specifically, APNs require unique attributes, with autonomy as a key feature. They practice collaboratively with medical team members in an interactive environment. However, based on their education, skills, and experience, they usually function without supervision, make independent decisions, and manage their time and workload effectively and efficiently. They must be accountable for the care they provide, including quality of care, patient satisfaction, and efficient use of resources.8 They have the authority to fulfill their responsibilities and be accessible to patients. Another key characteristic of the APN is leadership. APNs set the standard for other health care professionals, particularly nurse colleagues, by undertaking educational and research initiatives aimed at improving outcomes and contributing to the ever-expanding body of educational resources about MS and MS nursing.

Brykczynski5 identified additional domains and competencies applicable to the ambulatory care setting, including developing strategies for dealing with concerns over consultation, self-monitoring and seeking consultation as necessary, using physician consultation, and giving constructive feedback to ensure safe practices. Fenton and Brykczynski6 expanded on the Benner model to develop CNS competencies: • Recognizing recurrent generic problems resolvable by policy changes • Coping with staff and organizational resistance to change • Providing support for nursing staff • Making the bureaucracy respond to family/patient needs

APN Role Components Administration The MS APN may be responsible for various administrative duties, including supervision and scheduling of staff, budgets, policy and procedures, and quality assurance. APNs may function as a link between the patient and family and the total range of personnel and services required in MS care. This component of the APN role is similar to that of a case manager, frequently requiring direction of resource management and clinical systems development.9

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specific health deviations, and rehabilitation needs are a few areas in which APNs have taken a lead role.1

Education Educational responsibilities include teaching varying audiences about MS. Patients and families are given information about the implications of an MS diagnosis, the pathophysiology of the disease, prognostic indicators, and pharmacological and nonpharmacological management.10 A key role is to establish realistic expectations with regard to lifestyle and treatment options in patients and families and to instill this knowledge and these skills in colleagues.3,11 Other team members to benefit from the specialized knowledge of APNs are physical therapists, occupational therapists, speech/language pathologists, social workers, and ancillary nursing staff. Because of their specialized knowledge and experience, MS APNs can dispel misconceptions about MS, interpret and distill research findings, and empower patients by helping them to make informed decisions. They also contribute to the body of scientific knowledge about MS through data collection, nurse-initiated research, collaborative projects, and outcome assessment.

Advocacy As advocates, APNs have far-reaching responsibilities. Patient advocacy involves negotiation on behalf of patients with employers, insurance companies, and other external agencies. APNs offer emotional and situational support as advocates for nursing and other staff members. They strive to prevent and resolve conflicts, reduce stress, and improve clinical judgment. MS APNs monitor outcomes of patient care, guide staff in skill acquisition, facilitate interdisciplinary care patterns, and act as role models for students and newer members of the MS team.1

Clinical Practice The primary APN role is that of expert clinician.1,9,10 In many areas of the United States and Canada, APNs are licensed to prescribe medications and are responsible for the assessment, diagnosis, evaluation, and follow-up of patients. Thus, APNs must demonstrate in-depth understanding of MS, its course, symptom management, disease-modifying treatments, and diagnostic tests. Although independent practice may be the norm in primary care, collaborative practice facilitates appropriate interventions for needs in disease management, disease-state monitoring, rehabilitation, and psychosocial concerns in MS care. This theme of interdependence finds the MS APN working with neurologists, nurse colleagues, medical specialists, rehabilitation specialists, and a wide array of individuals providing technical expertise and support.

Collaboration As pivotal members of the MS health care team, APNs collaborate with multiple disciplines through referrals for appropriate care and follow-up. The team approach with neurological, rehabilitative, medical, and nursing specialists and those who provide the many services for MS facilitates a comprehensive, continuous, and unduplicated range of services for patients and families and is a model used for many other diseases.1 APNs also network with representatives of the pharmaceutical industry and community support and other programs to ensure that patients have full access to appropriate medications and technological aids such as home modifications, mobility equipment, costly disease-modifying agents, rehabilitation services, intrathecal pumps, home care programs, nutritional support services, counseling, education, assistive devices, and communication aids.1

Domains of MS Advanced Practice Nursing Domains are defined as realms of accountability and responsibility for the performance of explicit competencies. The four domains specific to MS advanced practice nursing were derived from the models discussed above.1

Research

Nurse-Patient Relationship

APNs have become a major force in evidence-based practice because of their increased knowledge of immunology and the relevance to current therapies, the use of published standards of care, and development of protocols that are being used worldwide. For example, skin care, dose titration for interferon-beta products, and side-effect management are the results of the pooled expertise of MS specialist nurses and studies that have evolved from their experience. As principal investigators in clinical trials, they coordinate research efforts, perform physical examinations, ensure patient adherence to protocols, and evaluate outcomes. Participation in clinical trials, psychosocial research, quality-of-life studies, and data collection are just a small part of the APN research role. Women’s health concerns in disability, male-

This domain includes • Therapeutic alliance built on mutual trust and respect with the patient from diagnosis through the disease course • Education and teaching for the patient, family, and professional colleagues, as well as the APN • Promotion of health and well-being with a focus on wellness and the impact of illness on the course of the disease • Social and family interactions with full assessment regarding the effect of MS on quality of life • Empowerment of those affected by MS through ongoing information, support, and skill development • Autonomy with self-direction but including advice and support from others

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• Collaboration with MS team members in personal practice or through networking • Advocacy for the nursing profession and for patients and families • Flexibility by seeking creative solutions for complex problems • Holistic care with a total view of the impact of the disease on each individual • An accepting attitude

• Identifying and addressing primary care needs across the health care continuum • Recognizing patient symptoms and treating them when appropriate • Referring patients to appropriate health care providers • Assessing outcomes in follow-up visits APNs provide counseling and education for health and wellness. Thus, they must approach patients holistically, encouraging lifestyle changes that will benefit the patient’s general health and well-being beyond those that address specific aspects of MS. MS-specific physical problems that APNs should be equipped to address include visual deficits, sexual dissatisfaction, urinary tract infections and other bladder-related problems, sedentary lifestyle, muscle weakness, myalgia, tremor, spasticity, paresthesias and sensory loss, bowel incontinence, pain, vertigo, fatigue, sleep disturbances, and seizures. Mental problems associated with MS include cognitive changes, depression, and anxiety. Patients with advanced MS may suffer from pressure sores, urinary complications, and respiratory complications. They are also susceptible to hazards of immobility such as osteoporosis, muscle atrophy, joint contractures, and safety issues. APNs must be alert for these complaints and be prepared to take preventive measures to avoid their development. APNs are frequently contacted by patients who have problems that are not specific to MS; APNs should be able to evaluate these problems and provide appropriate referrals. Women with MS face a particular set of challenges, including reproductive issues such as contraception and pregnancy. MS APNs can counsel women regarding these issues and refer them to specialists if necessary. MS APNs also measure and monitor outcomes. Various tools are available with which to measure disability and other MS-specific problems. APNs should be familiar with these tools and be able to administer them and interpret the results. Outcome measures are used to obtain valid and reliable results that can be replicated across the disease continuum.1

Comprehensive Care Across Disease Continuum Because MS follows a variable course both across all patients and within individual patients, this domain is vital. The key is a holistic approach that meets the biological, psychological, social, and spiritual needs of patients and their families throughout the disease course. APNs must not only be able to assess and bolster, when possible, a patient’s environment, support networks, transportation needs, and financial and insurance resources but also identify potential problems such as abuse and neglect and gender-specific issues. Evaluation and follow-up are crucial across the disease continuum. Encouraging adherence to therapy and care plans and facilitating access to community-based resources is essential. APNs must use innovative practice and problem-solving strategies to meet the challenges faced by patients and their families as the disease progresses.1

Professional Persona APNs must uphold the ethical standards of practice and adhere to all aspects of professional accountability. In addition, MS APNs should maintain and update their clinical competencies and encourage this practice in their colleagues through participation in continuing education programs and certification courses. Through involvement in professional societies, APNs can update their knowledge and influence policy in the MS arena.

Scholarly Inquiry and Research APNs are encouraged to think critically when reviewing research study designs, methods, and findings. Participation in patient-centered clinical research and observational outcomes research is an important component of this domain. The appropriate dissemination of relevant research findings promotes optimal patient care.1

Case Studies Case Study 1 Ursula is a 45-year-old woman with a 10-year history of MS. She has two grown children. She was forced to stop working during the early part of 2003 because of frequent exacerbations of MS. Ursula has been treated with oral corticosteroids but has not had intravenous therapy. Ursula has not been treated with disease-modifying therapy (DMT); her neurologist feels that she would not benefit from treatment because of how long she has had the disease. Her walking has deteriorated, and she is subject to fatigue. She presents to the MS center requesting a second opinion about the benefits of

MS Practice The complex treatment protocols involved in managing MS require APNs to have skills in diverse arenas.1,2 ,7,10 They must be able to identify and address problems associated with MS in addition to those that are more general, which may fall under the purview of primary care practitioners. For the MS APN, primary care encompasses the following:

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physical therapy. Her last magnetic resonance imaging (MRI) scan was 6 years ago. In addition to her trouble walking and fatigue, Ursula complains of urinary urgency, frequency, nocturia, and constipation.

• Evaluate the patient’s living situation to determine whether he needs greater community-based assistance.

Case Study 3 Susan is a 34-year-old woman with a 2-year history of MS. She is a homemaker with two small children. She has been on glatiramer acetate for the past year and initially responded well to treatment. During the past 4 months, she has had two exacerbations requiring treatment with intravenous steroids. Her last exacerbation left her with left hemiparesis, and she has started using a scooter outdoors. Other symptoms include ongoing fatigue and forgetfulness. She wants to stop treatment because she is tired of injecting herself. Her family does not want to help her.

APN interventions: • Update patient on the latest information about MS, its pathology, and rationale for DMT. • Clarify the difference between exacerbations and ongoing symptoms. • Refer the patient for MRI to determine interval changes; assess for contrast enhancement. • Assess and treat bladder and bowel problems. • Clarify the potential benefits of physical therapy for ambulation difficulties, reduction of fatigue, and possible improvement of endurance and conditioning. • Assess the patient for concomitant problems in health and wellness (eg, blood pressure, cardiac status, diet, and daily stressors). • Continue to encourage and support the patient.

APN interventions: • Explore family dynamics regarding assistance with injections. • Reeducate the patient about the value of sustained DMT. • Assess the patient for etiology of fatigue other than MS. • Consider MRI of the brain with and without gadolinium. • Refer the patient to physical therapy for mobility and safety and to occupational therapy for energy conservation/effective energy expenditure. • Try to involve the family in the patient’s care through counseling and education. • Encourage the patient to remain on therapy in the interim until all diagnostic studies and interventions have been completed.

Case Study 2 Charles is a 31-year-old man who has been on glatiramer acetate treatment for 3 years. He previously experienced one or two relapses annually; this has been reduced to fewer than one per year. He lives alone and has intermittent assistance from a community program. He complains of short-term memory problems and difficulty with activities of daily living (ADLs). The patient calls early one Friday morning stating that he has had facial pain for about a week and needs to see a dentist. He calls his nurse practitioner for a referral. While on the telephone, the nurse assesses the nature, location, quality and duration, and relieving or worsening factors of his pain. Based on this telephone assessment, the nurse practitioner determines that the pain emanates from his ear to his chin and is worse at night and asks him to return to the office for follow-up and treatment.

Case Study 4 Edward is a 43-year-old man with a 4-year history of MS. He has had a progressive course despite interferon treatment. His last MRI demonstrated no enhancing lesions in the brain, but he had a plaque at C5–C6. He presents at the MS center convinced that he has developed neutralizing antibodies to interferon treatment and requesting alternative therapy. APN interventions: • Provide the patient with education and information about neutralizing antibodies and their effect on interferon therapy. • Assess the patient for changes in neurological examination. • Repeat MRI of the C spine and/or brain if neurological examination is significantly worse. • Consider laboratory testing to screen for underlying infection. • Collaborate with a neurologist regarding antibody testing, and discuss potential change of therapy.

APN interventions: • Assess the patient for potential trigeminal neuralgia, and schedule a return visit for assessment and treatment. Acute management with steroids or long-term pharmacological management may be necessary for his neuropathic pain. • Fully review systems to appraise for contributing symptoms resulting in altered ADLs. • Consider referral to a neuropsychologist for cognitive testing and follow-up once the acute episode is under control. • Refer the patient for rehabilitation assessment (physical and occupational therapy) and possibly ongoing therapies.

Case Study 5 Samantha is 28 years old and has two small children. She has a high school education, and her husband is a truck driver. They have problems making ends meet at home. Saman-

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tha has been on DMT for 2 years. She calls the MS center to state that her MS is stable and she wants to stop treatment. When she comes into the center, the nurse ascertains that the patient is also tired of self-injecting, and her husband is unwilling to assist her. Her husband also asserts that, because her relapses have stopped, therapy is no longer necessary.

References 1. Costello K, Harris CJ, Maloni H, et al. Advanced Practice Nursing in Multiple Sclerosis: Advanced Skills, Advancing Responsibilities. New York: Bioscience Communications; 2003. 2. Harris CJ, Halper J. Multiple Sclerosis: Best Practices in Nursing Care— Disease Management, Pharmacologic Treatment, Nursing Research. New York: Bioscience Communications; 2004. 3. Costello K, Halper J. Multiple Sclerosis: Key Issues in Nursing Management–Adherence, Cognitive Function, Quality of Life. New York: Bioscience Communications; 2004. 4. Benner PE. From Novice to Expert: Excellence and Power in Clinical Nursing Practice. Menlo Park, CA: Addison-Wesley; 1984. 5. Brykczynski KA. An interpretive study describing the clinical judgment of nurse practitioners. Sch Inq Nurs Pract. 1989;3(2):75–104. 6. Fenton MV, Brykczynski KA. Qualitative distinctions and similarities in the practice of clinical nurse specialists and nurse practitioners. J Prof Nurs. 1993;9(6):313–326. 7. Brown SJ. A framework for advanced practice nursing. J Prof Nurs. 1998;14(3):157–164. 8. Hanna DL The primary care nurse practitioner. In: Hamric AB, Spross A, Hanson CM, eds. Advanced Nursing Practice: An Integrated Approach. Philadelphia, PA: Saunders; 1996:407–424. 9. Sparacino PSA. The clinical nurse specialist. In: Hamric AB, Spross A, Hanson CM, eds. Advanced Nursing Practice: An Integrated Approach. Philadelphia, PA: Saunders; 1996:381–405. 10. Skalia K, Hamric AB. The blended role of the clinical nurse specialist and the nurse practitioner. In: Hamric AB, Spross A, Hanson CM, eds. Advanced Nursing Practice: An Integrated Approach. Philadelphia, PA: Saunders; 1996:459–490. 11. Halper J. The nature of multiple sclerosis. In: Halper J, ed. Advanced Concepts in Multiple Sclerosis Nursing Care. New York: Demos Medical Publishing; 2001:1–26.

APN interventions: • Assess patient neurologically and functionally and for her understanding of MS and DMT. • Do a chart review with the patient to ascertain her disease course on and off therapy. • Explore other options to assist the patient with selfinjection. • Assess the patient’s home situation, and refer her to community-based agencies for assistance, as appropriate. In all of the above situations, APNs provide follow-up assessment, counseling, education, and support on an ongoing basis. They should also sustain and reinforce the patient-APN relationship throughout the patient’s course of MS.

Summary An ever-increasing body of medical, nursing, and scientific knowledge has contributed to advances in the management of chronic diseases such as MS. The changing face of MS requires that APNs remain current about the latest developments in research and treatment and poised to incorporate emerging therapies into the treatment regimen. They are in a unique position to take a leadership role in optimizing outcomes for patients with MS while encouraging ongoing collaboration with other members of the health care team. 

Additional Reading Burgess M. Multiple Sclerosis: Theory and Practice for Nurses. London: Whurr Publishing; 2002. Halper J, Holland NJ. Comprehensive Nursing Care in Multiple Sclerosis. New York: Demos Medical Publishing; 2002.

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