Art and Science of Nursing Care in Multiple Sclerosis CE

Transcription

1 Art and Science of Nursing Care in Multiple Sclerosis CE By: June Halper, MSN, ANP, MSCN; Kathleen M. Costello, MS, CRNP, MSCN This article is a CE certified activity. To earn credit for this activity, visit: This activity is supported by an independent educational grant from Teva Neuroscience.

2 Art and Science of Nursing Care in Multiple Sclerosis Art and Science of Nursing Care in Multiple Sclerosis CE June Halper, MSN, ANP, MSCN; Kathleen M. Costello, MS, CRNP, MSCN Release date: March 30, 2010 Valid for credit through March 30, 2011 Target Audience This activity is intended for advanced practice nurses, nurse practitioners, and any other specialist who cares for patients with multiple sclerosis. Goal The goal of this activity is to outline the challenges of providing comprehensive care from the perspective of advanced practice specialists and evaluate the safety, tolerability, and efficacy of multiple sclerosis therapies. Authors June Halper, MSN, ANP, MSCN Advanced Practice Nurse, UMDNJ New Jersey Medical School, Newark, New Jersey Disclosure: June Halper, MSN, ANP, MSCN, has disclosed the following relevant financial relationships: Served as a consultant for: EMD Serono; Teva Neuroscience, Inc. Served as a speaker or a member of a speakers bureau for: Consensus Medical; University of Northern Texas Ms. Halper does not intend to discuss off-label uses of drugs, mechanical devices, biologics, or diagnostics not approved by the US Food and Drug Administration (FDA) for use in the United States. Kathleen M. Costello, MS, CRNP, MSCN Nurse Practitioner, Research Associate, Johns Hopkins MS/TM Center, Baltimore, Maryland Disclosure: Kathleen M. Costello, MS, CRNP, MSCN, has disclosed the following relevant financial relationships: Served as an advisor or consultant for: Biogen Idec, Inc.; EMD Serono, Inc.; Novartis Pharmaceuticals Corporation; Teva Neuroscience, Inc. Served as a speaker or a member of a speakers bureau for: Biogen Idec, Inc.; EMD Serono, Inc.; Teva Neuroscience, Inc Ms. Costello does not intend to discuss investigational drugs, mechanical devices, biologics, or diagnostics not approved by the US Food and Drug Administration (FDA) for use in the United States. Editor Anne Roc, PhD Scientific Director, Medscape, LLC Disclosure: Anne Roc, PhD, has disclosed no relevant financial relationships. Pg.2

3 CME Reviewer/Nurse Planner Laurie E. Scudder, MS, NP Accreditation Coordinator, Continuing Professional Education Department, Medscape, LLC; Clinical Assistant Professor, School of Nursing and Allied Health, George Washington University, Washington, DC; Nurse Practitioner, School-Based Health Centers, Baltimore City Public Schools, Baltimore, Maryland Disclosure: Laurie E. Scudder, MS, NP, has disclosed no relevant financial relationships. Learning Objectives Upon completion of this activity, participants will be able to: 1. Describe the role of the nurse and nurse practitioner in multiple sclerosis (MS) management 2. Identify existing therapies for MS and contrast their safety, tolerability, and efficacy profiles Credits Available Nurses ANCC Contact Hour(s) (0.5 contact hours are in the area of pharmacology) Medscape, LLC is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center s Commission on Accreditation. Awarded 1.00 contact hour(s) of continuing nursing education for RNs and APNs; 0.50 contact hours are in the area of pharmacology. Accreditation of this program does not imply endorsement by either Medscape, LLC or ANCC. Instructions for Participation and Credit There are no fees for participating in or receiving credit for this online educational activity. For information on applicability and acceptance of continuing education credit for this activity, please consult your professional licensing board. This activity is designed to be completed within the time designated on the title page; participants should claim only those credits that reflect the time actually spent in the activity. To successfully earn credit, participants must complete the activity online during the valid credit period that is noted on page 2. Follow these steps to earn CE credit*: 1. Read the target audience, learning objectives, and author disclosures. 2. Study the educational content online or printed out. 3. Online, choose the best answer to each test question. To receive a certificate, you must receive a passing score as designated at the top of the test. MedscapeCME encourages you to complete the Activity Evaluation to provide feedback for future programming. You may now view or print the certificate from your CME/CE Tracker. You may print the certificate but you cannot alter it. Credits will be tallied in your CME/CE Tracker and archived for 6 years; at any point within this time period you can print out the tally as well as the certificates by accessing Edit Your Profile at the top of your Medscape homepage. *The credit that you receive is based on your user profile. Hardware/Software Requirements MedscapeCME is accessible using the following browsers: Internet Explorer 6.x or higher, Firefox 2.x or higher, Safari 2.x or higher. Certain educational activities may require additional software to view multimedia, presentation, or printable versions of their content. These activities will be marked as such and will provide links to the required software. That software may be: Macromedia Flash, Adobe Acrobat, or Microsoft PowerPoint. Pg.3

4 Art and Science of Nursing Care in Multiple Sclerosis Art and Science of Nursing Care in Multiple Sclerosis Faculty June Halper, MSN, ANP, MSCN UMDNJ New Jersey Medical School Newark, New Jersey Kathleen M. Costello, MS, CRNP, MSCN Johns Hopkins Multiple Sclerosis Center and Transverse Myelitis Center Baltimore, Maryland Anne Roc, PhD: Hello, I am Dr. Anne Roc, Scientific Director at Medscape, and I would like to welcome you to our live Web conference titled Art and Science of Nursing Care in Multiple Sclerosis. This is a continuing medical education activity made possible by an independent educational grant from Teva. Before we begin, let me take a few moments to go over the format of today s program. We will begin with a presentation from Ms. June Halper who will provide some background on MS [multiple sclerosis] and discuss individualized MS care from a nursing perspective. This will be followed by a presentation from Ms. Kathy Costello, who will discuss disease-modifying therapies for MS as well as side effects and adherence issues and symptom management. Each presentation will last about 20 minutes, and weaved throughout are polling questions for you, the audience, to answer. At the completion of both presentations, there will be a question and answer session, so we encourage the submission of questions through the box at the bottom of your screen. You may submit a question at any time during the Web conference. At the end of the program, a pop-up will appear with a link to the post-test for you to answer questions and obtain CE [continuing education] credit. Learning Objectives Describe the role of the nurse and nurse practitioner in multiple sclerosis (MS) management Identify existing therapies for MS and contrast their safety, tolerability, and efficacy profiles The learning objectives of this nursing continuing education activity are to describe the role of the nurse and nurse practitioner in MS management and to identify existing therapies for MS and contrast their safety, tolerability, and efficacy profiles. Pg.4

5 Individualized Therapy in MS: New and Key Concepts June Halper, MSN, ANP, MSCN UMDNJ New Jersey Medical School Newark, New Jersey Now I d like to introduce our first presenter, Ms. June Halper, nurse practitioner at UMDNJ New Jersey Medical School in Newark, New Jersey. Ms. Halper will present Individualized Therapy in MS: New and Key Concepts. Good evening, June. Definition of MS The most common chronic disease affecting the central nervous system (CNS) in young adults The pathologic hallmark of MS is inflammatory, demyelinating plaques in the CNS Immune-mediated, chronic, inflammatory disease, precipitated by unknown environmental factors in genetically susceptible individuals Degenerative disease characterized by demyelination and axonal loss Weiner HL. Ann Neurol. 2009;65: Compston A, Coles A. Lancet. 2002;359: June Halper, MSN, ANP, MSCN: Good evening. This slide talks about the definition of MS, and basically, if I really wanted to do a definition of MS, we would be sitting here for quite a while, so I am just going to talk a little bit about the immune definition of the disease. It is the most common chronic disease affecting the central nervous system [CNS], which we all know is the brain and spinal cord, in young adults, and possibly that is now changing. The range of MS is certainly no longer just for young adults; it affects people as they age and we are also seeing a substantial pediatric population. So the range of MS has changed quite a bit because of our ability to diagnose it and track it more effectively. The pathologic hallmark of MS is inflammatory and demyelinating plaque in the CNS, and while we really do not understand the cause of MS, we are learning more and more about the histology of the disease. It has been defined as an immune-mediated chronic inflammatory disease precipitated by an unknown environmental factor -- a trigger such as a virus -- in genetically susceptible individuals. The cause of MS is not known and that is what perplexes scientists as well as clinicians because treatments are really based on what we are seeing, which is the chronic inflammation vs the target of the causative agent. The problem that we are also seeing in MS is that, besides being inflammatory, it is also degenerative and it is characterized by demyelination (the destruction of the myelin in the CNS), as well as axonal loss (the loss of the neural fiber that conducts from one neuron to the next). I believe we have a polling question. Pg.5

6 Art and Science of Nursing Care in Multiple Sclerosis Interactive Polling Question (Questions answered incorrectly will be highlighted.) What is your experience in managing and caring for patients with MS? Very experienced Moderately experienced Not experienced Dr. Roc: Yes, we now have our first polling question for the audience. What is your experience in managing and caring for patients with MS? Do you feel you are very experienced, moderately experienced, or not experienced at all? Please choose an answer and we will go over the results in a few seconds. While we wait, June, in your first slide on the definition of MS, what are you finding in terms of the nurse s understanding of the pathology and etiology of the disease? Ms. Halper: Well, it depends on the nurse and where they are in their career. Certainly, nurses who are experienced in MS do get it, but when you are talking to a younger nurse who is just coming out of school, I think all of 15 minutes may be spent on MS and other neurologic diseases. So it is still [thought of] as a disease that lands people in wheelchairs and it is a disease of myelin. We now know it is a much more complex situation. The other problem we face is that nurses do not get a broad education in immunology, so we have a wonderful challenge, just like with this program, to teach nurses that MS is just not a disease of myelin but it is very complicated. Dr. Roc: Okay. Now, it looks like our results are going to be coming in shortly. It appears that a large majority of our participants are moderately experienced or not experienced at all. Ms. Halper: Oh, yes. That means we have our work cut out for us. Dr. Roc: Yes. Pg.6

7 Epidemiology Approximately 400,000 cases in the United States a - (estimates range from 250,000 to 500,000) Chances of developing MS are 1:1000 in general population b Estimated 2.5 million cases worldwide c Highest incidence in whites - Higher prevalence with northern European ancestry d Higher incidence in women (> 2 to 3:1) d,e 3/4 of cases present between ages 15 and 45 years a National MS Society. What is multiple sclerosis? multimedia-library/brochures/general-information/index.aspx February 7, 2010; b Compston A, Coles A. Lancet. 2002;359: ; c Frohman EM. Med Clin North Am. 2003;87: ; d Hogancamp WE, et al. Mayo Clin Proc. 1997;72: ; e Orton SM, et al. Lancet Neurol. 2006;5: Ms. Halper: The epidemiology of MS is changing every day. We used to think it was just a disease that affected people in the Northeast part of the United States or the northern climates; we are starting to see a lot more MS in the southern parts of the United States. We are seeing MS occurring in Africa and Glasgow. We are seeing it in India. In fact, I just read an article that they are seeing MS in Somalia in Africa, so the range is changing and the epidemiology is changing. In the United States, there are approximately 400,000 cases, although the estimates, as you can see on this slide, are variable. The chances of developing MS are 1:1000 in general, and yet we see MS occurring in clusters. There are an estimated 2.5 million cases worldwide, and the highest incidence is in the Caucasian population of Northern European ancestry, although we are seeing a lot of people with African-American background; we are seeing pure African; we are seeing Indians from India. The only place I know it is not occurring is in populations in the northern parts of Canada and Alaska. The highest incidence is in women, and the newer figures are actually 2:1 or 3:1 and there are a lot of investigations to try to figure out why. Again, three quarters of the cases do present between 15 and 45 years of age, yet, we are seeing people in their 60s and we have seen young children as early as 5 and 6 years old. So something is going on: either we are diagnosing them more readily or the disease itself is changing. Disease Progression Measures of brain volume Relapses and impairment MRI burden of disease MRI activity Secondary-progressive Preclinical Relapsing-remitting Disability Time Adapted with permission from JS Wolinsky. Pg.7

8 Art and Science of Nursing Care in Multiple Sclerosis The other thing that is very different [is that] we used to think MS just occurred as a relapsing form or relapsing-remitting and progressive disease. But we now know that besides relapsing-remitting and more progressive forms, there is something called the preclinical or clinically isolated syndrome (CIS). You can see on this slide the preclinical phase. When you look at the bottom of this slide, you see the little arrows going up. Those arrows are MRI [magnetic resonance imaging] relapses, MRI activity, and these actually have been shown to occur before the first relapse. The little line that goes up and down is the first relapse that is showing up clinically during which time the patient is diagnosed with MS. But if you look to the left, evidently undercover, so to speak, there is MRI activity going on. That preclinical phase or clinically isolated phase is now showing after several studies, that if we treat the patient during that phase of the disease, we may prevent or delay the real attack of MS, meaning we are going to delay the definite diagnosis. There is a lot of work going on; in fact, there is a syndrome that we now call radiologically isolated syndrome (RIS) where there is a lot of MRI activity and there are no attacks at all. And the real ethical question now going on in the MS world is Should we treat the MRI? There are many doctors out there who are saying, I treat the patient, not the MRI. But on the other hand, if a person is asymptomatic and has signs of some disease (eg, cancer or breast lump), you treat it. Then, is MRI the first signal with MS? There is still some debate about what to do, and I am sure we are going to learn more about this new syndrome as the years go by. Disease Progression Measures of brain volume Relapses and impairment MRI burden of disease MRI activity Secondary-progressive Preclinical Relapsing-remitting Disability Time Adapted with permission from JS Wolinsky. This shows the viewer what the preclinical phase or clinically isolated phase looks like on MRI. You see that white spot or enhancing lesion, then if you look to the other side, you see all those white spots or inflammatory changes in relapsing-remitting disease. Note that over time, as the person progresses into a more progressive phase, you will notice -- and even a person who is inexperienced in reading MRI will notice -- the larger areas of damage that one sees in the more progressive phase. The other thing I would point out is those little arrows you notice frequently occurring to the left, and then still frequent during the relapsing-remitting phase. Over time, as the disease becomes more progressive -- and Kathy will talk to you more about that being the rationale for treatment and treatment early -- MRI activity decreases but damage in the brain, and if we had a spinal cord MRI, you would see, the damage that occurs is irreversible. Pg.8

9 Disease Progression Measures of brain volume Relapses and impairment MRI burden of disease MRI activity Secondary-progressive Preclinical Relapsing-remitting Disability Normal neurologic exam Minimal disability Increased limitation in walking ability Need for walking assistance Restriction to wheelchair Helpless bed patient Death 10 Time Kurtzke JF. Neurology. 1983;33: Adapted with permission from JS Wolinsky. In this slide, you see again like in the previous slide with preclinical or CIS, relapsing-remitting and secondary-progressive. There is a scale at the bottom called the expanded disability status scale, or EDSS, and this is a very important scale. It may not be too accurate in terms of upper extremity function as it concentrates mainly when it reaches number 4, and the EDSS mainly concentrates on walking, but we use these scorings in clinical trials. Notice in correlating the preclinical normal neurologic exam, and again, comparing it to the MRI in the previous slide, as time goes on, the person without treatment can become much more disabled, [have] fewer relapses on MRI, and [have] much more progression. These slides give you an idea of what happens to the person in terms of their brain volume. The relapses, both MRI and clinical, decrease, but then the burden of disease, both physical and on MRI, continues to progress and accumulate. The Challenges of MS Dynamic in nature A wide range of impact - Pediatric to aging population - Variable courses - A spectrum of symptoms - Psychological and socioeconomic implications - Unpredictable - Demands skilled and comprehensive care MS is a challenging disease to the patient, the family, the community, and of course, to the healthcare professional, and particularly the nurse who is usually the point person with this type of patient. Just like any other chronic disease, nurses tend to be right on the front line in terms of helping the patient. As you have seen on the previous slide, MS is dynamic, it is not static. Even though we talk about relapses and remissions, I have always said to my colleagues, MS never sleeps, and you have already seen that, those arrows going up and down. It is not a disease that remains stable [but is] under the cover. Somebody said recently to me, under the tip of the iceberg, under the waterline, there is a lot of stuff going on on MRI in the pathology. It has a wide range of impact; it ranges from pediatrics to aging [populations]. Its courses are variable, and the shortness of this lecture really does not give you all that you need to know. I am hoping that all of you on the line will become interested enough to take a look at some of the references that are on each of the slides. [MS involves] a spectrum of symptoms. It has both psychological and socioeconomic implications, and it is unpredictable. In terms of nurses, and of course, other MS team members such as neurologists, local specialists, and social workers, it demands skilled and comprehensive care. Pg.9

10 Art and Science of Nursing Care in Multiple Sclerosis The Power of One: What Is Individualized MS Treatment? MS can be relapsing or progressive; symptoms vary from individual to individual and within the individual himself/herself Relapses occur unexpectedly Symptoms can be mild or severe, ongoing or intermittent, disabling or tolerable, treatable or not treatable External factors can influence function and safety In terms of what I have just said, the power of one, we really have -- in fact, I would like to thank Kathy because a couple of months ago, she asked me to do a talk on that being the power of one, the patient -- one patient at a time has an individualized course and therefore requires individualized treatment because of the variability of the symptoms, the unexpected relapses that can occur, and the symptoms that can range from mild to severe, ongoing or intermittent, disabling or tolerable, treatable and not treatable. We don t have time to go through this whole thing, but external factors such as heat and stress can influence function as well as safety. The Power of One The challenge for healthcare professionals is the variety and possibility of MS Each person presents a different set of symptoms, character of onset, and disease course Ethnocultural considerations should be included in our assessments along with socioeconomic considerations The challenge for us as healthcare professionals is the variety and possibility of MS, and each person who we meet, each person who we assess, presents us with a different set of symptoms, a different character of onset, and of course, the disease course. And as I mentioned earlier, this is not just a disease of Caucasians; there are people of different colors, different backgrounds, and different ages. So ethnocultural considerations should also be included in our assessment of each patient, along with the socioeconomic implications of the disease. Pg.10

11 What Are the Implications? Patient needs are variable and include clinical care, education, counseling, rehabilitation, and advocacy Assess health literacy: MS may not be in the patient s vocabulary What worked in one patient may not work in another We need dynamic and flexible tools to empower the healthcare team What are the implications [of] the variability? We are also challenged today by cultural competence and health literacy. Designing a care plan has to be individualized because what works with one patient may not work with another, and certainly, when you think about who we assess, MS or chronic illness may not even be in their vocabulary. MS or chronic illness of a 22- or a 25- or even a 30-year-old is not typical of what a person expects; they expect to be in their 50s or 60s or 70s before they face chronic illnesses. So we have a lot of work to do, and we need tools that are flexible and dynamic to help us and our team help the patient cope with this unpredictable, scary chronic illness. I liken this to that Charlie Brown character who is walking around with a cloud over his head all the time. Our job is to try to lighten that cloud; unfortunately, sometimes it becomes difficult, but we try very hard. The Concept of a Medical Home First conceived in 1967 by AAP Council on Pediatrics Originally used to define a place a single source of all medical information about a patient Actually refers to healthcare that is accessible, family centered, coordinated, comprehensive, continuous, compassionate, and culturally effective Sia C, et al. Pediatrics. 2004;113(suppl5): Another concept, and I think some of you may have been hearing it now with the Obama plan coming along, is that of the medical home. Both Kathy and I work in comprehensive care centers, and I came across this concept of the medical home, which was conceived in 1967 by the American Academy of Pediatrics. It was originally used to define a single source of all medical information about a patient. It made sense to pediatric patients at that time, but it actually referred to healthcare that was accessible, family centered, coordinated, comprehensive, continuous, compassionate, and culturally effective. And I have the reference for you at the bottom of this slide. The bottom line is that it sounded wonderful for pediatrics, but it fits MS. It certainly is something that we are trying to do through our organization, the Consortium of MS Centers (CMSC). Pg.11

12 Art and Science of Nursing Care in Multiple Sclerosis Principles of the Patient-Centered Medical Home Each patient has an ongoing relationship with a physician and a healthcare team trained to provide first contact, continuous and comprehensive care The team of individuals collectively take responsibility for ongoing care of the patient There is a whole-person orientation, including all stages of life and all stages of illness and wellness The principle of the medical home or a comprehensive care center is that each patient has an ongoing relationship with not only the physician but [also with] the team trained to provide first contact with him or her and the family. The team of individuals [helps] lighten the load for one another because, again, MS may be diagnosed at 22 but can last to 82, and this is a disease that we have to age with our patients. Having a team is certainly a good way of addressing the comprehensive needs that each patient brings to the plate. That really struck me, that concept of the whole person orientation, including all stages of life and stages of illness and wellness. That is something I think we as nurses do believe quite strongly in. Principles of the Patient-Centered Medical Home Care is coordinated and/or integrated across all elements of the complex healthcare system Care is facilitated by registries, information, technology, health information exchange, and all means to ensure culturally sensitive interventions Quality and safety are the hallmarks of the medical home Joint Principles of the Patient Centered Medical Home, AAFP, AAP, ACP, AOA, February And again, looking at the principles in terms of the references that I found in preparing my talk, that care is coordinated and integrated across all elements of the complex healthcare system. As all of you know out there, the system that we are dealing with is quite complex, and it is getting more complex with electronic medical records and all the things that we need to learn about: technology, health information exchange, and very importantly, the means that we have to use to ensure culturally competent and sensitive care. I think the hallmarks of what I found when I was doing my preparation for a talk I gave in 2009, is that quality and safety are the hallmarks of the medical home. Pg.12

13 Putting a Name on the Face This concept puts a name on the face of MS comprehensive care as embodied in the CMSC, its VA-SIG, IOMSN, and the MS Centers of Excellence The complex spectrum of MS requires individualized and dynamic assessments and treatment plans The challenge for the healthcare team is to cope with change with skill and flexibility This concept puts a name on the face of all that we have been trying to do in MS. Certainly, [this is embodied in] the CMSC. We have a VA special interest group in which many veterans throughout the United States are now developing MS. Not so much the men, but there are a lot of women that are entering the Armed Forces and many of whom have become diagnosed with MS. There is also the International Organization of MS Nurses and the Centers of Excellence that we see springing up. So this individualized care concept, this medical home concept, really put the name on the face of what we have been trying to do over the past few years. We have also felt that this complex spectrum of MS surely requires the individualized treatments and dynamic assessments that the medical home has called for. The challenge that we are facing is to try to get all this paid for or reimbursed and also to keep our skills and flexibility up because certainly the world of MS, as well as many chronic illnesses in the neurologic field, are changing constantly. So we are trying very hard to keep ourselves learning, our skills up and flexible, and hopefully, this program tonight is going to help you continue to do that. I believe on the next slide we have a polling question. Pg.13

14 Art and Science of Nursing Care in Multiple Sclerosis Interactive Polling Question (Questions answered incorrectly will be highlighted.) Which of the following is the greatest barrier to providing optimal care to patients with MS? Side effects associated with current treatment options Patient adherence Empowering patient with self-care strategies Providing educational resources to families/caregivers Collaborating with other healthcare providers for overall management Dr. Roc: That is right; we have another polling question for the audience. Which of the following do you feel is the greatest barrier to providing optimal care to patients with MS? Is it side effects associated with current treatment options, patient adherence, empowering the patient with self-care strategies, providing educational resources to families and caregivers, or collaborating with other healthcare providers for overall management? While we wait, June, which of these do you feel is a significant barrier to providing individualized care? Ms. Halper: I think the one answer that I would give is probably not here, and that is certainly the insurance system that we have been dealing with, but all of these are right answers. I think the biggest area that I faced recently is the issue of insurance coverage and the variable coverage that each of our patients has, ranging from private insurance to Medicare and Medicaid. A lot of our patients are either underinsured or not insured at all. Dr. Roc: That is a system-wide problem. Ms. Halper: Yes. But again, like I said, all these are very good answers. This question is an eye-opener for nurses coming into the field or in the field because all of these can be barriers to effective care, and it takes time and effort to educate patients to try to overcome them. Dr. Roc: All right. Well, it appears from our audience that the majority of you feel that collaborating with other healthcare providers is very important, and that certainly is something that we will strive to achieve in future educational activities. Pg.14

15 Nursing Care in MS: Roles and Responsibilities Support and educate patients in making healthcare decisions Aid patient empowerment to self-care Assess and refer for evaluation by healthcare professionals Offer community resources Ms. Halper: That is good for future programs. Nursing care in MS, I mean, certainly, this is not unique to MS. These are roles and responsibilities that we have with all our patients to support and educate them, to make appropriate decisions, to empower our patients, to constantly assess and evaluate and refer our patients to appropriate services including community resources. This is certainly not unique to MS but it is certainly a prominent issue that we face as nurses. Assessment and Diagnosis What is the patient s disease course? What treatment(s) have been prescribed? How has MS affected the patient s quality of life (QoL)? How are symptoms interfering with the patient s functional status? How has MS affected the patient and family? What are the available resources? When we assess [patients], we try to provide a nursing diagnosis. The questions that we should ask in terms of sitting down with the patient and trying to understand what their course has been, looking at that earlier slide on relapsing-remitting disease: Has it been progressive? Is it CIS? Certainly, we want to know what kinds of treatments have been prescribed for the patient and how the MS, treatments, and the burden of disease management affect their quality of life. More and more research has been supported through the FDA [US Food and Drug Administration] requiring that we look at quality of life. What are their symptoms and are they interfering with the patient s functional status? And broadly, as something that we do very well, I believe, is looking at the whole sphere of influence -- the patient, family, and friends -- and again, very importantly, what are the available resources? Pg.15

16 Art and Science of Nursing Care in Multiple Sclerosis Addressing Psychosocial Issues Counsel and support patients and their partners as they adjust to changes in lifestyle and living with a chronic illness or disability Empower patients with self-care strategies to treat their disease and its symptoms Provide patients with information about reliable resources and supports to assist them to overcome and live with MS We also want to counsel and support our patients and their partners as they adjust to changes in lifestyle. We want to empower patients to learn how to take care of themselves. One of the new thrusts actually led from the United Kingdom is the philosophy of self-management, and Kathy is going to talk a lot about disease management, which requires a lot of self-management. We certainly want to provide patients with information about resources and support to assist them to overcome their MS. Meeting the Challenges in MS Care: Strategies and New Approaches Nursing resources include: - Published guidelines about disease management - Consensus statements on symptomatic management - IOMSN (the International Organization of MS Nurses) The (CMSC) Consortium of MS Centers By helping our patients, we want to know about nursing resources such as published guidelines about disease management. The CMSC has published guidelines on bladder management and fatigue. We have certainly good guidelines and a consensus statement on self-management. The International Organization of MS Nurses, and I have given you the Website there, has a number of publications, monographs as well as pamphlets, available as print and on the Website. Pg.16

17 The National Quality Forum Endorsed 45 practices to guide healthcare systems: - Culturally appropriate - Patient-centered - Communication - Community engagement - Workforce training - Appropriate practices Nurse Pract. 2009;5: One of the things I found, and the reference is listed below from the journal, Nurse Practitioner, is this National Quality Forum -- and you might want to visit their Website -- which endorsed 45 practices to guide the healthcare system in terms of culturally appropriate care, patient-centered care, and communication. I am not going to read this slide but this National Quality Forum really was a very big eye-opener to me. It almost sounds like nursing, and yet, it wasn t; it was addressing that whole issue of quality care and the comprehensive care that patients need throughout their lifetime with healthcare challenges. Conclusion Individualizing treatment consists of adopting or adapting the principles of the medical home The MS nursing professional today has a wide variety of educational and skills development supports Meeting the challenges in MS care requires knowledge, flexibility, and the ability to broadly assess the wide impact of this disease In conclusion, one of the things that we have learned and we will continue to learn is that individualizing treatment may in many instances consist of adopting or adapting the principles of a medical home. The MS nursing professional today has a wide variety of educational and skills development support, but we also need to continue to grow and develop as our knowledge of MS grows and develops. Meeting the challenges of MS care certainly requires knowledge, flexibility, and the ability to broadly assess the wide impact and the dynamic impact of this disease. Thank you. Pg.17

18 Art and Science of Nursing Care in Multiple Sclerosis Comprehensive Management of MS Kathleen M. Costello, MS, CRNP, MSCN Johns Hopkins Multiple Sclerosis and Transverse Myelitis Center Baltimore, Maryland Dr. Roc: Thank you, June. Ms. Kathy Costello, Nurse Practitioner at Johns Hopkins Multiple Sclerosis and Transverse Myelitis Center in Baltimore, Maryland, will now discuss Comprehensive Management of Multiple Sclerosis. Good evening, Kathy. Kathleen M. Costello, MS, CRNP, MSCN: Good evening, Anne, and thank you very much, and thank you, June, for a wonderful presentation, which I find so relevant to what we are doing, what we have been doing, and it is in concert with what we are trying to do on at least a national scale in trying to rein in some of our healthcare system. But you have given us some excellent principles that we should use to guide our care and to make sure that we remain culturally sensitive and that we understand the individual s need and what that individual with MS requires to be successful. Now we are going to turn to some more specific recommendations and also some more specific interventions. We will talk about goals of MS management and then how we hope to address each of those goals. This is a pretty packed 20 minutes, so everybody, buckle your seatbelts because here we go. CMSC Recommendations for Care: Global Principles Principles of care regardless of impairment or limitations - Full and timely access to healthcare - Timely and accurate diagnosis of MS/MS-related symptoms and non-ms-related conditions - Accurate information and skilled advice - Continuity of care - Collaborative and interdisciplinary approach to care - Care that is sensitive to culture - Support for health-related QoL issues Harris CJ, et al. Int J MS Care. 2003;5: The next slide should be the CMSC s recommendations for care, and these are global principles. This is but a small piece of an article that was written in the International Journal of MS Care way back in 2003, and it was really just the beginning. It was a multidisciplinary committee s attempt to say these are the things that everybody with MS should have as part of their care, and it is much more detailed than what is on this slide. Basically, it is believed that everyone should have timely access to their care; an accurate diagnosis; they should be getting skilled advice; there should be continuity; [and there should be a] collaborative and interdisciplinary approach to care. And that last polling question that was asked, one of the things that came up was the ability to collaborate with those in other disciplines, and I too find that very difficult, but in a disease like MS, it is absolutely critical to optimal care. Again, sensitivity to culture, and then always supporting the health-related quality of life issues, are part of the recommendations for care. These recommendations are for care across the disease spectrum from the time of diagnosis and are based upon someone s ability to participate in their usual activities. And there are specific recommendations for each place that someone may find themselves in the spectrum of MS. Pg.18

19 Goals of MS Disease Management Treat/manage relapses Modify the course of disease with disease-modifying therapies (DMTs) - Relapses, disability Manage symptoms Improve QoL When we look at the goals of MS disease management, we are really looking at 4 different things because these things are going on in everyone with MS at one time or another. People with MS experience relapses; that is how they are going to enter into our healthcare system. Once they are diagnosed, we want to, as soon as possible, begin to modify the disease course, and that has entered us into a whole new realm of MS management, particularly for those of us in the nursing profession. We always have to manage symptoms: as good as many of these disease-modifying therapies are, people still develop symptoms and we need to be able to address them. At all times, from the moment of diagnosis throughout the course of disease, we are assessing, maintaining, or hoping to improve someone s quality of life. Interactive Polling Question (Questions answered incorrectly will be highlighted.) How confident are you in managing MS relapses? Not confident Somewhat confident Moderately confident Confident Extremely confident Dr. Roc: Okay, we have come to our next polling question. How confident are you in managing MS relapses? Do you feel you are not confident, somewhat confident, moderately confident, confident, or extremely confident? While we wait, Kathy, what do you feel is the most difficult aspect of managing relapses? Ms. Costello: Well, I think the very first aspect of managing any symptom is a good assessment, and it is a 2-way street. We can ask all the right questions, but we have to hope that the patient is able to give us appropriate and accurate answers because it is that assessment that is going to drive whether or not we determine it is an MS exacerbation or if there is a metabolic source to their symptoms, or perhaps something else altogether is going on. So I think that in my mind, getting off on the right foot, which is getting a correct assessment, is the most important aspect. And I think for nurses, this often is our job. Patients will call in, often it is nurses who are answering the calls, and we are providing that initial assessment, which becomes critical in appropriate intervention. Dr. Roc: All right, and now it appears that the majority of the participants do need information on managing MS relapses based on the polling results. Pg.19

20 Art and Science of Nursing Care in Multiple Sclerosis Treat/Manage MS Relapse AKA: attack, exacerbation, flare, episode New neurologic symptoms that last greater than hours that are not due to a metabolic cause, preceded by a period of stability Metabolic cause: infection, exposure to heat Ms. Costello: Our first goal is to treat and manage a relapse. The first thing, of course, might be really to know what is a relapse, and in someone with a diagnosis of MS, this is a new neurologic symptom that lasts greater than hours, is not due to a metabolic cause or some other cause, and is preceded by a period of stability. So basically, we are taking someone out of their period of clinical remission, they are developing a symptom, and it is staying around. We must investigate to see if this symptom belongs to MS or if it belongs to an infection or fever or maybe some other diagnosis altogether. Management of Exacerbations Assessment of the symptoms Diagnosis of MS relapse Common treatment is high-dose glucocorticoids - IV methylprednisolone - IV dexamethasone mg/day - High-dose oral prednisone - +/- Oral prednisone taper Rehabilitation strategies Accelerate recovery from an attack No effect on amount of recovery No long-term benefit Once we have determined that diagnosis and we believe that this person is experiencing a new episode of MS symptoms, then we have to intervene. It is not a requirement nor is it life-threatening not to treat with steroids, but oftentimes, steroids in high doses -- and this is high-dose glucocorticoids -- are used: often IV [intravenous] methylprednisolone or dexamethasone, sometimes highdose oral prednisone, and some physicians like to give an oral prednisone taper following the initial high dose although this occurs less frequently. This is not a requirement; it has been found that these high doses of glucocorticoids help to accelerate recovery from these symptoms that the person is experiencing. However, these steroids have very little benefit in terms of long-term outcome: they are not going to change the long-term outcome of the disease. They are really used for that particular episode. We have to remember that it is not all about pharmaceuticals: when someone is having an exacerbation and they have some weakness or coordination problem or mobility issues, rehabilitation strategies may also be very important in getting this person back up on their feet. Pg.20

21 Side Effects of Steroids Short term Metallic taste Insomnia Jittery feeling Sour stomach Mood swings Weight gain Acne Decreased K+ Long term Osteoporosis Cushingoid appearance Cataracts Hypertension Diabetes Ulcer disease Muscle wasting Suppression of adrenal glands Unfortunately, as with most effective treatments, there are a number of side effects (both short-term and long-term) that are associated with steroids that we need to educate our patients about so that they know what is going on. It is important to let people know about mood swings, its effect on the stomach, weight gain, and metabolic changes that can occur. If these steroids are used in a pulsed fashion on a regular basis, we need to be concerned with long-term effects, which can be very devastating for patients. We have unfortunately had a number of people who have developed osteoporosis and cataracts, and a few, although it is not on this slide, who have developed avascular necrosis in the hip joints, which is often associated with more frequent use but can be associated with even a single course of steroids. It can ultimately lead to destruction of the joint and the need for joint replacement. Brand Name Generic Name Administration Indication Copaxone 1996 Glatiramer acetate 20 mg daily SC RRMS CIS Rebif 2002 High-dose IFN beta-1a 22 µg or 44 µg SC 3x week Relapsing forms Avonex 1996 Low-dose IFN beta -1a 30 µg IM weekly Relapsing forms CIS Betaseron 1993 Extavia 2009 High-dose IFN beta-1b 250 µg SC qod Relapsing forms CIS Tysabri 2004/2006 2nd line therapy Natalizumab IV 300 mg q 4 weeks Relapsing forms Novantrone nd line therapy Mitoxantrone IV by protocol max lifetime dose Worsening RRMS, SPMS, PRMS RRMS = relapsing-remitting MS SPMS = secondary-progressive MS PPMS = primary-progressive MS Jacobs, et al. Ann Neurol. 1996;39: ; IFNB MS Study Group. Neurology. 1995;45: ; PRISMS Study Group. Lancet. 1998;352: ; Johnson, et al. Neurology. 1995;45: ; Polman, et al. N Engl J Med. 2006;354: Although we are likely to see relapses, we want to do our best to modify these relapses, and to do that, which is our second goal of treatment, is to modify the disease course. On this extremely busy slide, you see all of the treatments that are currently approved for disease modification in MS. The first 5 -- Copaxone (glatiramer acetate), Rebif (high-dose interferon [IFN] beta-1a), Avonex (lowdose IFN beta-1a), Betaseron, and Extavia (high-dose IFN beta-1b) -- are self-injected medications that are considered first-line therapy. Rebif, Avonex, Betaseron, and Extavia are all IFN beta therapies given in varying dosages and administration frequency. Copaxone (glatiramer acetate) is a non-ifn also given by self-injection. In the far right column, you see the FDA indication and that 3 of the therapies -- Copaxone (glatiramer acetate), Avonex (low-dose IFN beta-1a), and then Betaseron and Extavia (high-dose IFN beta-1b), which are actually identical products marketed by 2 different companies -- are approved and have an indication for CIS. As June mentioned, CIS is that first clinical indication that someone has a demyelinating disease that may go on to become MS. All of these therapies were found to delay the onset of the next symptom, which would, of course, transition from CIS to MS. There are 2 second-line therapies: Tysabri (natalizumab) and mitoxantrone. Natalizumab is a monoclonal antibody given IV every 4 weeks for relapsing forms of MS. Mitoxantrone is given IV usually every 3 months for a lifetime maximum dose. It is indicated for worsening relapsing MS, secondary-progressive MS, and progressive-relapsing MS, but not primary-progressive MS. Unfortunately, to date, there are no treatments that are specifically approved as a disease-modifying therapy for primary-progressive MS. Pg.21

22 Art and Science of Nursing Care in Multiple Sclerosis All of these treatments have varying side effects that we are about to touch upon and different types of management strategies that are important for us as nurses. The Importance of Early Effective Treatment With DMTs MS may be active in the brain and spinal cord in the absence of clinical symptoms a-d,g Lesions may occur early and may be associated with irreversible damage a-f Evidence suggests that degenerative changes can occur in normalappearing white matter Damage can lead to permanent disability a,b,d Starting effective treatment early may help slow the accumulation of damage g,h a Trapp BD, et al. N Engl J Med. 1998;338: ; b Ruiz-Pena JL, et al. BMC Neurol. 2004;4:8; c Lossef NA, et al. J Neurol. 2001;248: ; d De Stefano N, et al. Arch Neurol. 2001;58:65-70; e Ferguson B, et al. Brain. 1997;120(pt3): ; f Filippi M, et al. Brain. 2003;126(pt2): ; g Coyle PK, Hartung HP. Mult Scler. 2002;8:2-9; h Narayanan S, et al. J Neurol. 2001;248: June mentioned CIS. She also mentioned the importance of getting people started on treatment early, and there are some statistics that are very important that indicate that we should be treating as early as possible. We know that MS can be active in the brain and the spinal cord in the absence of clinical symptoms -- it is the iceberg that June mentioned. What we see on the surface or what we see clinically can be but a small indication of the amount of disease activity that is actually going on in the CNS. Lesions can occur early in this disease, and they are often associated with irreversible damage. To date, we do not have therapies that can reverse the damage. We don t have therapies that can remyelinate. The best we can hope for now is to prevent or reduce the incidence of additional relapses and progression: some of our therapies have some indication of neuroprotective qualities, and some of the treatments on the horizon may have some neuroprotective benefit. We do know that the more [MRI] activity someone has early in the disease, the more likely it is that they are going to become disabled sooner and have greater disability. We know that these early inflammatory lesions and inflammatory events are at least in part responsible for the permanent disability that many of our patients suffer from. And so, it is believed that starting effective treatment early may slow the accumulation. Certainly, it will have an impact on the disability, the degeneration, and the progression that we see that is related to early inflammatory events in the CNS. Pg.22