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Nursing PRACTICE

In

June HalperCOLLEEN HARRIS

T h i r d E d i t i o n

MULTIPLE SCLEROSIS

A CORE CURRICULUM

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Nursing Practice in Multiple Sclerosis

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June Halper, APN-C, MSN, MSCN, FAAN is a certified adult nurse practitioner who has specialized in multiple sclerosis since 1978. She was a founder of the MS Center in Teaneck, NJ, and was the Executive Director from its founding in 1985 to 2008. Ms. Halper has been the Executive Director of the Consortium of Multiple Sclerosis Centers and the International Organization of Multiple Sclerosis Nurses since 1997.

Ms. Halper has published and lectured extensively on multiple sclerosis and its ramifications. Her numerous publications include Comprehensive Nursing Care in Multiple Sclerosis and Advanced Concepts in Nursing Care in Multiple Sclerosis; she was a co-editor of Staying Well with Multiple Sclerosis: A Self-Care Guide and of Nursing Practices in Multiple Sclerosis: A Core Curriculum. She is a member of the American Academy of Nurse Practitioners, the founding director of the Interna-tional Organization of MS Nurses (IOMSN), and the recipient of the IOMSN’s first June Halper Award for Excellence in Nursing in Multiple Sclerosis. Ms. Halper continues to be involved in clinical care as a nurse practitioner at the MS Center of the New Jersey Medical School, UMDNJ, Newark, NJ, and at the Bergen Vol-unteer Medical Initiative in Hackensack, NJ. She is dedicated to the fight against multiple sclerosis through educating the next generation of healthcare profession-als, as well as expanding research to promote best practices in the comprehensive management of the disease.

Colleen Harris, NP, MN, MSCN is a Nurse Coordinator/Nurse Practitioner of the University of Calgary MS Clinic, where she has been involved in multidisci-plinary care for much of her nursing career. She holds an Adjunct Assistant Profes-sor appointment with the faculty of Nursing at the University of Calgary, where she is actively involved in both undergraduate and graduate nursing education. In addition to publishing numerous articles on MS and chronic illness, she has authored chapters in both Comprehensive Nursing Care in Multiple Sclerosis and Ad-vanced Concepts in Nursing Care in Multiple Sclerosis.

Her interests specific to MS include intrathecal baclofen therapy, pain man-agement, health outcomes research, and the development of multidisciplinary col-laborative models of care.

Colleen, along with several of her MS nursing colleagues from North America, Europe, and Australia, was involved in the creation of the International Organization of MS nurses (IOMSN) and is one of the past presidents of this orga-nization. She has been active in committee and project work with the Consortium of MS Centers (CMSC) for 25 years and was president of this organization from 2007 to 2009.

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Nursing Practice in Multiple Sclerosis

A Core Curriculum Third Edition

June Halper, APN-C, MSN, MSCN, FAAN

Colleen Harris, NP, MN, MSCN

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Library of Congress Cataloging-in-Publication Data

Halper, June. Nursing practice in multiple sclerosis : a core curriculum / June Halper, Colleen Harris. — 3rd ed. p. ; cm. Rev. ed. of: Nursing practice in multiple sclerosis : a core curriculum / founding editor, June Halper ; editorial advisors, Kathleen Costello, Colleen Harris. 2nd ed. c2006. Includes bibliographical references and index. ISBN 978-0-8261-1927-8 (alk. paper) I. Harris, Colleen. II. Nursing practice in multiple sclerosis. III. Title.

[DNLM: 1. Multiple Sclerosis—nursing. WY 160.5] 616.8’340231--dc23

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v

Contents

Preface vii

Part I— Background InformatIon for nursIng PractIce In multIPle sclerosIs

Ch 1 The History of Multiple Sclerosis 3

Ch 2 Domains of Multiple Sclerosis Nursing Practice 11

Ch 3 Change Theory and Its Application in Multiple Sclerosis Nursing 23

Ch 4 Multiple Sclerosis Nurses’ Code of Professional Conduct 27

Part II—the dIagnosIs of multIPle sclerosIsCh 5 Epidemiology of Multiple Sclerosis 33

Ch 6 The Complete Neurologic Examination 39

Ch 7 Magnetic Resonance Imaging 45

Ch 8 The Diagnosis and Prognosis of Multiple Sclerosis 51

Part III—management of the dIsease Process Ch 9 The Immune System and Its Role in Multiple Sclerosis 61

Ch 10 Multiple Sclerosis: Managing the Disease 67

Part IV—functIonal alteratIons: PhysIcal domaInsCh 11 The Symptom Chain in Multiple Sclerosis 81

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vi Contents

Ch 12 The Multiple Sclerosis Care Team 103

Ch 13 Bladder Dysfunction 107

Ch 14 Bowel Elimination and Continence 115

Ch 15 The Nurse’s Role in Advanced Multiple Sclerosis 121

Part V—functIonal alteratIons: Personal domaInCh 16 Psychosocial Implications 129

Ch 17 Financial and Vocational Concerns 133

Part VI—shaPIng multIPle sclerosIs nursIng PractIceCh 18 Special Needs in Multiple Sclerosis 141

Ch 19 The Nurse’s Role in MS Research 147

Ch 20 Complementary and Alternative Therapies 153

Ch 21 Overview 157

Ch 22 Personal Review Questions 169

aPPendIcesA: Supplemental Readings and Resources in Multiple Sclerosis 181

B: Consortium of Multiple Sclerosis Centers’ Recommendations for Care of Those Affected by Multiple Sclerosis 187

C: Rating System for Evidence-Based Practice 201

D: Clinical Course of Multiple Sclerosis 203

E: MS Diagnostic Criteria 205

Index 211

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vii

Preface

Multiple sclerosis nursing requires new and innovative strategies and structure to meet the complex needs of MS nursing professionals who range from LPNs, RNs, and Advance Practice Nurses (Nurse Practitioners and Clinical Nurse Specialists). The content of this book focuses on the knowledge needs of MS nursing professionals in order to support their professional growth and development. This nursing specialty has evolved from an under-recognized cadre of historic figures in multiple sclerosis to a broad spectrum of nursing professionals who practice throughout the world.

We owe an important debt of gratitude to many who have preceded us: Dr. Elsie Gulick, Dr. Nancy Holland, the late Linda Morgante, and the late Katharine Donohoe. These nurses are and were women with vision who have inspired all who followed them into this growing model of nursing practice.

Linda Morgante set the stage for us by investigating the concept of hope in multiple sclerosis, a disease with enormous implications for pa-tients and families as well as the healthcare community. Your editors have adopted the following model of care into this work, as well as all of our other publications. This model incorporates the domains of MS Nursing—Clinical Care, Education, Research, and Advocacy—into an algorithm that has the leitmotif of hope throughout all nursing activities.

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viii Preface

June Halper and Colleen Harris

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IBackground Information

for Nursing Practice in Multiple Sclerosis



3

1The History of

Multiple Sclerosis Care

Objectives

Upon completion of this chapter, the learner will

identify the evolution of knowledge that has impacted the care of people ■■

with multiple sclerosis (MS);

discuss turning points in the definition of MS.■■

MS is a common neurologic disease of young adults. It affects peo-■■

ple in the prime of their lives with unpredictability, variability, and uncertainty.

Age range is 10–65 years, with the highest incidence between 30 and 50 years.

In recent decades, the hallmark of disease progression has been altered ■■

due to disease-modifying therapies for relapsing and worsening forms of the disease.It has been known as a ■■ peculiar disease state (Robert Carswell), a gray degeneration of the cord (Jean Cruveilhier), and insular sclerosis (William Moxon and William Osler).

4 Nursing Practice in Multiple Sclerosis


Disseminated sclerosis ■■ was a term used in the early part of the 20th century.The name ■■ multiple sclerosis is a derivation from the German “multiple sklerose.”Early cases were as follows:■■

Saint Lidwina van SchiedamA.

Halla, the drummer Bock, and William Brown, a Hudson Bay B. officialSir Augustus d‘EsteC.

Heinrich HeineD.

Margaret GattyE.

W. N. P. BarbellionF.

An early monograph on MS was written by Charles Prosper Ollivier.■■

Other writings on MS were by Robert Carswell, Jean Cruveilhier, ■■

Marshall Hall, and others. These included anatomic depictions of au-topsy findings, and the description included a clinical history.In 1868, Jean-Martin Charcot framed the disease and thoroughly de-■■

scribed the clinical and pathologic features of MS. He added to the observations of Carswell, Cruveilhier, and the German physician von Frerichs with his own, calling the disease le sclerose en plaques or “scar-ring in patches.”In 1873, Dr. Moxon in England characterized the disease based on ■■

observations.In 1878, Dr. Ranvier discovered myelin.■■

For over 100 years, physicians were frustrated trying to identify the ■■

cause of MS. Theories of causation ranged from infection to genetics, vascular problems, and immunologic deficits.In 1916, Dr. Dawson at the University of Edinburgh in Scotland used a ■■

microscope to describe inflammation around the blood vessels and the damage to the myelin with a clarity and thoroughness that has never been surpassed. Little was known then about the brain’s function, so the meaning of these changes was only a guess.In 1919, abnormalities in cerebrospinal fluid were observed. The sig-■■

nificance was unknown.In 1925, the first electrical recording of nerve transmission was made ■■

by Lord Edgar Douglas Adrian. The science of electrophysiology estab-lished techniques needed to study nerves.In 1928, myelin was studied under a microscope; oligodendrocytes ■■

(cells that produce myelin) were discovered.

The History of Multiple Sclerosis Care 5


In 1935, Dr. Rivers at the Rockefeller Institute in New York reproduced ■■

the autoimmune response classically seen in MS. An animal model for MS was developed, called experimental allergic encephalomyelitis.Dietary modification was studied with no conclusive evidence of ■■

benefit.Alternative or complementary therapies emerged as a frequently used ■■

supplement or a substitute for conventional treatments.In 1946, Sylvia Lawry founded the National Multiple Sclerosis Soci-■■

ety (NMSS) in New York City, which has expanded into a worldwide MS network of MS societies. Services and programs include a wide range of patient and family services, basic and psychosocial research, and MS education. NMSS and the Canadian MS Society cover North America with a wide range of programs and services. The International Federation of Multiple Sclerosis Societies has member organizations worldwide.Dr. Kabat at Columbia University received the first NMSS grant to ■■

study MS.Dr. Salk received an NMSS grant to study the immunology of MS.■■

In 1950, NMSS helped to establish a new division of the National Insti-■■

tutes of Health, that is, the National Institute for Neurologic Disorders and Stroke.In 1967, Ms. Lawry founded the International Federation of MS Societ-■■

ies, now the Multiple Sclerosis International Federation, which links MS societies around the world.In 1969, the first successful clinical trial in the treatment of MS was ■■

held.Placebo controlledA.

New rating scales and diagnostic standards were usedB.

Patients were given ACTH.C.

In the 1970s, research produced useful results.■■

Scientists studying experimental allergic encephalomyelitis sus-A. pected that myelin protein fragments prevented the disease.A mixture of the fragments was used to treat animals and then hu-B. mans with MS (copolymer 1).Steroids were widely used to suppress immune response.C.

In 1978, computed tomography scanning was first used for patients D. with MS.First experiments with interferons demonstrated their immune-E. modulating effects.



Dr. Howard Weiner in Boston studied cyclophosphamide in MS. F. Although never given U.S. Food and Drug Administration (FDA) approval as an immunosuppressant in MS, it is still widely used in clinical settings.The emergence of new treatments and diagnostic techniques led to G. the proliferation of MS treatment centers throughout North America and the beginnings of the team approach to MS care.

The 1980s saw the beginnings of major clinical trials in MS using ■■

immunomodulators, such as interferons and glatiramer acetate (copolymer 1).Dr. Young performed the first MRI on a patient with MS.■■

In 1984, it became apparent that MRI can visualize MS attacks in the ■■

brain, including many that did not manifest symptoms.In 1986, the Consortium of Multiple Sclerosis Centers (CMSC) was ■■

founded (www.mscare.org). The CMSC is the largest organization of MS health professionals in the world. It holds annual and regional meetings, consensus conferences, and training programs for MS pro-fessionals. It has a journal (International Journal of MS Care) and a news-letter (The MS Exchange). The CMSC Foundation funds scholarships and fellowships in MS training; the CMSC North American Research Committee on Multiple Sclerosis project has a large patient database to increase understanding of MS and its ramifications. Many studies have used the database.

In 1991, Rehabilitation in Multiple Sclerosis (RIMS), a European net-work, was founded. The European Committee on Treatment and Re-search in MS (ECTRIMS) was founded shortly thereafter. ACTRIMS, the North American counterpart, was established, followed by LACTRIMS, a Latin American organization representing Central and South America.

Subsequently, PCTRIMS covering the Pacific Rim countries and BCTRIMS in Brazil have been organized to represent care and re-search in their respective areas of the world.

In 1993, the FDA approved Betaseron (IFN-■■ blb) for relapsing-remitting MS (R-R MS) (Bayer Healthcare, Wayne, NJ).In 1996, Avonex (IFN-■■ bla) was approved for R-R MS (Biogen Idec, Cambridge, MA).



In 1996, Copaxone (glatiramer acetate) was approved for R-R MS (Teva ■■

Neuroscience, Kansas City, MO).

In 1997, the International Organization of Multiple Sclerosis Nurses ■■

(IOMSN) was founded (www.iomsn.org). The following are the goals and strategies of the IOMSN

Facilitate the development of a specialized branch of nursing in A. MS

Develop and maintain a mechanism by which members can 1. share information on practice positions and resourcesEstablish the IOMSN as a forum for discussion and collabora-2. tion on issues that concern MS nursesServe as a resource for external organizations related to MS prac-3. tice issuesPromote the acknowledgment of the contribution of IOMSN as 4. the preeminent organization of MS nursesParticipate with other nursing organizations involved in MS 5. care or related fieldsShare information on research activities among members6.

Establish standards of nursing care in MSB.

Develop minimal standards of nursing practice in MS1. Facilitate the development of a core curriculum for MS nursing 2. to disseminate this informationIdentify specific domains of MS nursing and define basic roles 3. and responsibilities in each domain

Support MS nursing research, basic research, and clinical trialsC.

Encourage research activities that contribute to the development 1. of a sound theoretical basis for MS practiceRecommend research topics for educational sessions at IOMSN 2. meetings for dissemination of evidence-based informationDevelop and implement nursing research3. Disseminate MS nursing research findings through publications 4. and educational activities

Educate the health-care community about MSD.

Promote communication among the IOMSN membership via 1. the newsletter, the Web site, and other venuesFacilitate internal and external communication about MS care 2. and research



MS nursing organizations exist in Sweden, Italy, Finland, Australia, ■■

and The Netherlands.

Multiple Sclerosis International Credentialing Board was founded in ■■

2001.

The Multiple Sclerosis International Credentialing Board is respon-A. sible for the development and administration of the certification examination in MS nursing.

The IOMSN endorses the concept of voluntary certification by B. examination for all nursing professionals providing care in MS. Those who work or have worked in this specialty and meet eli-gibility requirements may be candidates to take this examina-tion. Certification focuses specifically on the individual and is an indication of knowledge and skills and MS practice. MS nurs-ing certification provides formal recognition of a level of knowl-edge in the field and promotes the delivery of safe and effective practice in the domains of clinical practice (disease course and classifications, epidemiology, and distribution), advocacy (ethi-cal practice, negotiating the health-care system, empowerment, knowledge of community resources, patient rights, and consul-tation expertise), education (principles of teaching and learning, health promotion and change theory, special populations, and professional development), and research (evidence-based prac-tice, protection of human subjects, and research terminology and process).

All candidates must be licensed nursing professionals with at least C. 2 years’ experience in MS. Candidates must also agree to adhere to the IOMSN Code of Ethics.

The basic content of the examination covers the following:D.

Basic concepts of MS (disease course classification, pathophysi-1. ology of MS, and diagnostic process)

Pharmacologic and nonpharmacologic treatment2.

Symptom management3.

Psychosocial intervention4.

Research and education initiatives5.

Patient advocacy.6.

In 2000, mitoxantrone (Novantrone) was approved for worsening ■■

forms of relapsing MS.



In 2002, Rebif was approved for R-R MS (EMD Serono, Rockland MA).

In 2004, Tysabri (natalizumab) was approved for relapsing forms of MS. It was withdrawn from the market in early 2005 due to safety concerns (discussed further in this book). It was rereleased in 2006 with monitoring procedures in place.

In 2010, the first oral symptomatic medication, Ampryra (dalfampri-dine), was approved by the FDA to improve walking in MS.

In 2010, Gilenya (fingolimod), an oral disease-modifying therapy, entered the market for relapsing forms of MS (Novartis Pharmaceu-ticals, East Hanover, NJ).

In 2003, the CMSC issued its recommendations for MS Care (see Ap-■■

pendix B).In 2003, The United Kingdom Multiple Sclerosis Specialist Nurse As-■■

sociation ([email protected]) was founded.The goals and mission are similar to those of IOMSN.A.

The B. United Kingdom Multiple Sclerosis Specialist Nurse Associa-tion (MKMSSNA) has representation on the IOMSN board.

The Multiple Sclerosis Certification Examination was developed by the ■■

Clinical Care Committee of the CMSC in 2003–2004. The first examina-tion was offered in 2004 for MS specialists (not registered nurses).

Content of the examination includes concepts of rehabilitation, A. emotional issues, long-term care, and the above topics.Certification will validate expertise by examination of the multidis-B. ciplinary, interdisciplinary MS team.

ResOuRcesCutter, G., Yadavalli, R., Marrie, R. A., Tyry, T., Campagnolo, D., Bullock, B.,

et al. (2007). Changes in the sex ratio over time in multiple sclerosis. Neurology, 68(Suppl.), 162.

Halper, J., & Holland, N. J. (2011). An overview of multiple sclerosis. In J. Halper & N. J. Holland (Eds.), Comprehensive nursing care in multiple sclerosis (pp. 1–27). New York, NY: Springer.

Halper, J. (2007). The nature of multiple sclerosis. In J. Halper (Ed.), Advanced concepts in multiple sclerosis nursing care (pp. 1–26). New York, NY: Demos Medical Publishing.



Harris, C. J., & Halper, J. (2008). Multiple sclerosis: Best practices in nursing care. New York, NY: Bioscience Communications.

Silberberg, D. H. (1986). Multiple sclerosis. London, UK: Butterworth Heinemann.

Murray, T. J. (2005). Multiple sclerosis: The history of a disease. New York, NY: Demos Medical Publishing.

Murray, T. J. (2000). The history of multiple sclerosis. In J. S. Burks & K. P. Johnson (Eds.), Multiple sclerosis: Diagnosis, medical management, and rehabilitation (pp. 1–35). New York, NY: Demos Medical Publishing.

Noonan, C. W., Williamson, D. M., Henry, J. P., Indian, R., Lynch, S. G., Neuberger, J. S., et al. (2010). The prevalence of multiple sclerosis in 3 US communities. Preventing Chronic Disease, 7, A12.

Paty, D. W., & Ebers, G. C. (Eds). (1998). Multiple sclerosis. Philadelphia, PA: FA Davis.

Porter, B. (2002). The MS specialist nurse in the UK. International MS Journal, 9(2), 59–63.

Pittock, S. J. (2009). Clinical features and natural history of multiple sclerosis: The nature of the beast. In C. F. Lucchinetti & R. Hohlfeld (Eds.), Multiple sclerosis 3 (pp. 1–18). Philadelphia, PA: Saunders.

Polman, C. H., Thompson, A. J., Murray, T. J., & McDonald, W. I. (2001). Multiple sclerosis: The guide to treatment and management (5th ed.). New York, NY: Demos Medical Publishing.

Warren, S., Turpin, K., Janzen, W., Warren, K., & Marrie, R. A. (2010, October 15). Variance in health-related quality of life explained by socio-demographic and MS-related factors: Data from the North American Research Committee in Multiple Sclerosis. Paper presented at the ECTRIMS 2010 Annual Meeting, Goteborg, Sweden.

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