Introducing the AFib Support Team

Interview by Jodie Elrod
Interview by Jodie Elrod
The AFib Support Team, brought together by sanofi-aventis U.S., is a new national public awareness campaign that provides information for atrial fibrillation patients to help them manage their condition. The AFib Support Team is made up of an electrophysiologist, a cardiovascular nurse, a senior fitness expert and a lifestyle gerontologist. We talk to them about the initiative here. Bradley P. Knight, MD, FACC, FHRS What prompted the creation of the AFib Support Team initiative? The primary driver to create this support team is to increase public awareness of atrial fibrillation (AFib). Increased awareness leads to a better educated public, more informed patients, and potentially more funding for AFib research. Despite there being about 3 million Americans with AFib, there is very little awareness of the problem. For example, we recently did a radio media tour to launch this national initiative, and it was interesting that none of the radio hosts themselves had ever heard of AFib and usually had difficulty even pronouncing it. More people know the term ‘H1N1’ now than ‘AFib’. The initiative is intended to not just increase awareness of atrial fibrillation, but to make people aware that there are new therapies, including catheter ablation and antiarrhythmic drugs. It provides an additional resource for patients with AFib as a supplement to their interactions with health care providers. The sponsor is sanofi-aventis, which recently was given FDA approval for its new antiarrhythmic drug dronedarone. Although the website is sponsored by industry, the content is unbranded and discusses the full spectrum of therapies for patients with AFib. Describe your role in this initiative. I am the only physician involved. The team is also composed of a cardiovascular nurse, a lifestyle gerontologist, and a senior fitness expert. My role is to bring a physician’s perspective to the group, and to confirm the medical accuracy of the educational information provided to patients via the website. What is unique about the AFib Support Team initiative? This support team is unique in that it is a comprehensive initiative with a website that provides useful information for patients with AFib. There is an emphasis on the elderly, a population plagued by AFib. What is most misunderstood by AFib patients about their condition? For example, what are some of the most commonly asked questions you receive from patients? Most questions are based on a poor understanding of what AFib actually is. I think it is challenging for patients to understand the pathophysiology of AFib, because it requires a basic understanding of the anatomy and function of the heart, which itself is not widely understood. Part of the educational process with patients is teaching them how AFib differs from normal sinus rhythm and how that leads to symptoms and adverse events such as stroke and hospitalization. Kathy Berra, MSN, ANP, FAANP: How did you get involved in the AFib Support Team initiative? I was invited to participate because of my involvement in cardiology and cardiac rehabilitation for many years. In addition, I am the past president of the American Association of Cardiac and Pulmonary Rehabilitation and the Preventive Cardiovascular Nurses Association. My professional career has been dedicated to reducing the risk for heart attack and stroke and to helping people live well with chronic diseases. What will be some of the ways you will be participating? I look forward to speaking to the media and organizations interested in AFib about the significance of AFib and its risks and health consequences. I hope my involvement will help to improve the knowledge of healthcare professionals and patients about treatment options for AFib. In particular, I am interested in helping patients and their families learn how to improve their quality of life when living with AFib. How will people be able to start their own local AFib support teams? Why is this important? AFib is a chronic disease that can have serious consequences if not treated properly. If you have AFib, you may be asked to take medications that can help to manage your disease and at the same time, you may need to be monitored and that can have potential side effects. Also, living with a chronic disease like AFib can be difficult. If you do not understand and feel confident about your AFib treatments, your quality of life can also be affected. In addition, some people with a chronic disease often feel depressed. Having support can help you live well with AFib. Through social media, persons with AFib can reach out to each other for support and learn from each other. Support is always important when you are living with a chronic illness. You should first work with your healthcare professionals to understand your treatment plan. Then you need to develop a support team. Your healthcare professionals, family and friends all need to be part of this team. We want to offer you support too. Through our Support Team, we will help you learn ways to communicate your feelings, ask important questions about your treatments, and get your questions answered. Remember, you are the most important member of the “team.” What are some of the main concerns for AFib patients? Some of the main concerns are about medications and their potential side effects. When you have AFib you will likely be prescribed medications that will try to control your heart rate, heart rhythm and decrease your chance of having a blood clot. The medicines to control heart rate and heart rhythm will help you feel much better. Most people with AFib will be prescribed Coumadin to reduce their chance of having a stroke. When you are on Coumadin, your diet and lifestyle will be regularly evaluated and you will have frequent lab tests to determine your blood clotting levels. These lab tests are very important to have done regularly. Your doctor will follow your blood clotting levels very closely. When you are taking Coumadin, you may bruise more easily. Be sure to let your doctor know if you have frequent nosebleeds, blood in your urine or other abnormal bleeding. Some people who have AFib feel more tired than usual and get more shortness of breath with physical activity. Talk to your doctor about any symptoms you may have when you are physically active or at rest. Lastly, your doctor may recommend that you have a procedure called a “cardioversion“ to regulate your heart rhythm. What advice can you offer to persons with newly diagnosed AFib? I would advise them to spend as much time as they need with their health care team to get all of their questions answered and to keep in close contact in regards to how they are doing on their new medications. It is important to understand as much as you can about the medications that are prescribed and about AFib. Maintaining a positive attitude, report changing signs and symptoms, joining a cardiac rehabilitation program for support and surveillance, and learning how to control heart risk factors to prevent a heart attack or stroke are some of the key steps to living well with AFib. Make sure to check with your health care team if you are prescribed new medications for other health conditions. In addition, anyone with AFib should talk to their significant others, family, and friends about their AFib and get their understanding and support. Keeping a log of physical activity and symptoms as well as a record of blood pressure and medications is important for good “self care.” Make sure you see your health care team regularly, and call them with any questions. Remember, there is no such thing as a “dumb question.” Alexis Abramson, PhD, lifestyle gerontologist What interested you about the AFib Support Team campaign? I am thrilled to be a part of this group of medical and lifestyle experts to help aging Americans learn to live life more fully despite atrial fibrillation. My father has lived with AFib for more than 30 years, so I am acutely aware of the potential risks associated with this chronic disease and the benefits of incorporating lifestyle changes in an effort to manage AFib. As an expert in the field of aging, I am also aware that as one ages, their odds of developing atrial fibrillation increase dramatically. As someone who is extremely passionate about the well-being of older Americans, I would be remiss if I ignored the opportunity to help educate this population as it relates to the management of AFib. There is a lack of available support and materials for patients with AFib; therefore, most Americans don’t consider themselves to be at risk for this condition. By being a part of the AFib Support Team, I have the distinct opportunity to raise awareness and help educate mature adults and their caregivers about simple lifestyle changes they can incorporate into their lives to prevent, or reduce, the likelihood of their developing this potentially debilitating disease. Being part of the AFib Support Team positions me to help raise awareness, educate and inform mature Americans about the lifestyle risks associated with AFib. As an integral member of the AFib Support Team, I am helping to create “patient-centric” tools to support individuals as they take positive steps toward a lifestyle that will reduce the risks associated with AFib. I look forward to facilitating a greater understanding and raising awareness regarding the risks, and the need for preventative care, as it relates to AFib. Participation in the AFib Support Team gives me an outlet to share both my Gerontology background and my personal experiences in an effort to help promote a positive change in lifestyle and attitudes surrounding AFib. I am excited to be a part of a team that is taking proactive steps to educate the public and hopefully change their behaviors and enhance their level of understanding about the implications of living with, or developing, AFib. Will the AFib Support Team focus on a specific age range of atrial fibrillation patients? No. AFib is more likely to develop as a person grows older, but it can come into play at any age. Because life expectancies for Americans are on the rise, so too is the number of people with AFib. This means that, as you age, there are more reasons than ever to take care of yourself. What's more, many people who have AFib are also dealing with different health concerns, like high blood pressure, angina, heart failure, and diabetes. Some people with AFib have previously had a heart attack or a stroke. What are some of your tips for managing AFib in older patients with the condition? What obstacles do these patients often face in daily living? First, patients should talk to a health care professional about appropriate medical management of AFib. It’s a serious disease and should be managed by a physician. In addition to medical management, there are some recognized lifestyle changes that can improve the overall health of your heart. Your doctor may suggest that you make modifications in diet or avoid alcohol/tobacco consumption. While having AFib means that you may need to make certain adjustments to your daily life, it’s important to remember that many people with AFib continue living a normal, active life. However, you should always consult your healthcare professional about activities in which you are able to engage. A few tips are listed below, but there are many more on our Web site (www.afibsupportteam.com): • Travel: Discuss your travel plans with your healthcare team before leaving on a trip. Your doctor may be able to refer you to a physician located in the area you will be visiting, just in case one is needed. Also, be sure to bring the name and phone number of your doctor and extra doses of any medications you are taking. • Work: People with AFib can usually maintain their normal work schedule. If you are unsure of what impact your work situation has on you, speak with your healthcare professional. • Driving: Most people with AFib can continue to drive; however, if you do start to feel AFib symptoms, it’s important to pull over and call your healthcare professional. • Diet: The American Heart Association provides guidelines for a heart healthy diet that can be found on their Web site (www.americanheart.org). I also recommend speaking with your healthcare team about specific changes in your diet that are appropriate for you. Aging does not mean you have to give up the activities you love, though you may sometimes have to approach them differently. Talk to your healthcare team about managing your daily routine. If possible, please tell us about your own father’s experience living with AFib. How has this impacted your life and your decision to get involved in this initiative? Although living with AFib meant that my father needed to make certain adjustments in his daily life, he has been able to continue to live a normal, active life. This can be an emotionally and physically draining condition, and clearly the risks are potentially debilitating. My father has taken his situation extremely seriously and has adopted positive lifestyle changes to improve the overall health of his heart. As a Gerontologist I suggest mature Americans who already have an increased risk of developing AFib incorporate behavior changes into their everyday lives. Obviously there is no “one size fits all” approach, and my Dad has certainly made a concerted effort to always consult his healthcare team, which includes all of the medical professionals involved in the management of his AFib. In addition, he has always closely communicated with me and the rest of his close family and friends about his condition, so that we are in the loop at all times and are equipped to help if his condition changes. What events will the AFib Support Team be participating in? The AFib Support Team will be actively helping to develop new content on our Web site. Additionally, we will be helping to plan local events in cities around the country that will raise awareness for AFib and help people develop their own “personal” AFib support teams. Janie Clark, MA, fitness expert Tell us about your background and your experience working with cardiac/AFib patients. My master's degree in exercise physiology from the University of Central Florida included course work in cardiovascular health and cardiac rehabilitation. During 25-plus years of working with older adult fitness participants, I've served clients with a broad range of health concerns, from heart rhythm disturbances to back pain, Parkinson's disease, COPD, Alzheimer's disease and more. In particular, two areas in which I have specialized are nursing home and adult day-care activities management, often directing physical recreation for patients with multiple conditions. For example, it is not unusual for a single older adult individual to be faced with congestive heart failure (or other cardiac issues), severe osteoarthritis, and advancing dementia all at the same time. My approach has always been to work closely with the healthcare staff to develop a medically-approved physical activity plan, specifically tailored to the individual patient that is designed to counter physical disability, maximize personal independence, improve mood state and enhance overall quality of life. What are the recommendations on exercise for AFib patients? What is considered safe? There is no one formula that dictates a specific exercise prescription for AFib patients. That is because the circumstances and symptoms of AFib vary widely from individual to individual. Therefore, the response to physical exertion will also differ greatly among affected individuals. If there is one word that should stand out here, it is individualization. Once a patient's AFib is medically controlled, his or her healthcare team likely will allow exercise and provide the patient with personalized guidelines regarding prudent exercise modes, frequency, duration and intensity level. The patient will be encouraged to monitor his or her feelings and physical responses during exercise and to employ modifications as necessary (for example, stop and rest if feeling over-taxed). Both during and following exertion, the activity must be well-tolerated by the individual. For a previously active patient, this might mean cautiously resuming his or her former fitness regimen of walking, moderate strength training, and calisthenics. For others, it could mean reinstating non-structured physical activities such as performing active household tasks and yard work. In my experience, it has always been possible to find a safe, beneficial and enjoyable form of physical activity for everyone of any age, including AFib patients. To review, the three keys to remember are: 1) follow the advice provided by one's medical team, 2) insist on individualization, and 3) pursue activities that are well-tolerated. What are some common misperceptions for AFib patients about staying active? Patients may wrongly fear that a diagnosis of atrial fibrillation means an end to physical activity. Such misgivings are understandable because, after all, AFib affects the heart and patients reasonably want to avoid overstressing the cardiovascular system. Meanwhile, many AFib patients feel extremely tired much of the time. However, their healthcare team will work closely with them to implement the treatment interventions that are right for them on an individual basis, and this can help ameliorate fatigue and restore energy. The doctor might also order certain tests such as an exercise ECG to determine the patient's most beneficial physical activity level. In general, moderate exercise is good for sustaining overall health, preserving physical mobility, maintaining self-care skills (for example, dressing, grooming and preparing meals), promoting cognitive health and supporting emotional well-being. In fact, regular walking has been seen to reduce the incidence of atrial fibrillation. Even when only light activity is achievable, patients often can receive medical clearance to perform easygoing bed or chair-seated routines, range-of-motion work and deep breathing exercises. While remaining within their personal comfort zones, they can still enjoy both physical and mental stimulation and stay actively engaged in living. How can patients get more information about the AFib Support Team? We have a great Web site where patients can visit to find information from each of the experts on our team. There are fact sheets to help patients understand and meet the medical, lifestyle and fitness challenges presented by AFib, as well as general information on AFib. How often will new information be posted? We will be updating the site throughout the year, so it is important to check back to see the updates that are made. For more information, please visit: www.afibsupportteam.com