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At the emergency room I was told I hadblood clots and a close call with a strokebecause of atrial fibrillation. I’d never heardof afib. The hospital health-care professionalspacked me away with some prescriptionsand said, “You’ll be fine.” But I wasn’t fine.

My afib episodes came frequently. Andwhen blood clots are part of the equation,afib becomes terrifying. Since I was neverstable on blood thinners, I was literally astroke walking around waiting to happen.My family wouldn't let me go anywhere bymyself for fear I’d be by myself and have astroke and die. Finally, after almost 2 years, Ihad a surgical procedure and have been afib-free for 5 1/2 years.

Because of my experiences living withafib, working with health-care professionalsand connecting to other afib patients, I cre-ated StopAfib.org, a non-profit patientadvocacy organization. One of the mostimportant goals of StopAfib.org is to closethe gap that’s as wide as the Grand Canyonthat exists between doctors and patients.

As the founder of StopAfib.org, I hearfrom hundreds of patients a day as well asspeak at hospital-sponsored afib eventsaround the country where I talk to thou-sands of patients. I have also reached out tothe patient community for input, and theyhave shared many ideas for helping bridgethat communication gap.

Grand Canyon Communication GapWhy is this communication gap like the

Grand Canyon? Because health-care profes-sionals and afib patients can see each other,but they can’t communicate — sort of likeyelling across a canyon at each other!

This communication gap leads topatients being unsatisfied with their careand, what’s worse, having a lower quality oflife. Afib patients have a worse quality of lifethan even those who have had heart attacks.1

Fifty-six percent of afib patients report thecondition has had a negative impact on theirlives.2 In addition, about half of the patientsI’ve talked with are not satisfied with their

care. Their dissatisfaction is not related to anyprofessional skills, but instead is directlylinked to communication issues. Afib patientstold me that their health-care providers:• Don’t take patients seriously, or even lis-

ten to them• Don’t understand the fear of living with

afib• Trivialize their patients’ experiences, and

even make jokes about what they aregoing through

• Use medical jargon and don’t explain theterminology

• Blurt out instructions or explanations soquickly that they can’t be understood orremembered

• Talk down to patients, or talk only totheir family members, not to them

• Have to be constantly re-educated aboutthe effects of afib.

Such attitudes directly affect the timelinessand quality of care. For example, it takes anaverage of 1.7 years before afib is diagnosed,leaving patients vulnerable, according to AFStat™’s Out of Sync Survey.3 In Europe, theAF AWARE survey found an average of 2.6years before afib was diagnosed.4

One of the other consequences of thecommunication gap is that patients don’trealize the seriousness of afib. While health-care providers are twice as likely as patientsto recognize the seriousness of the condi-tion, the consequences of afib don’t registerwith the patient.3 And many times, the seri-ousness of afib isn’t realized until after apatient has suffered a stroke.

So, just how wide is this gap? Ninety-fivepercent of doctors and nurses believepatients are at a moderate to severe risk ofstroke. Yet only 45 percent of patients believethey have that risk.3While most health-careproviders discussed stroke risk, only abouthalf of patients heard it, according to boththe Out of Sync survey3 and the NationalStroke Association’s AFib STROKE survey.2

While 90 percent of health-care providersdiscuss preventing stroke, only 43 percent of

patients recall hearing about stroke preven-tion.3 In addition, when asked to namethe most important goal of afib treatment— to restore the heart’s normal rhythm, pre-vent stroke or control heart rate — only 33percent of patients chose stroke prevention.2

One reason for this communication gap

may be health-care provider attitudes.Compared with coronary artery disease andheart failure, afib is not typically seen by cli-nicians as a complex cardiac condition thatadversely affects quality of life. Therefore, asstated in a recent article in the Journal of

Bridging the AfibCommunications Gap:Afib Patient Perspectives from the Fourth AnnualWestern AF SymposiumMellanie True Hills, Speaker and CEO, StopAfib.orgDecatur, Texas

I’m an atrial fibrillation survivor. In 2003, I was working inmy home office when my heart felt like it skipped somebeats and started racing, pounding, and flopping. I felt dizzy

and lightheaded, and thought I was going to pass out. My rightleg was ice cold, and the vision in my right eye was blurry.

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StopAfib.org raises awareness about atrial fibrillation and strokes. Sincelaunching in 2007, the site has become the No. 1 arrhythmia site and theNo. 7 cardiovascular disorder site in the world.

Online forums at StopAfib.org and other media such as Facebook andTwitter allow afib patients to connect and share information.

Afib patients experience a poor quality of life — even worse than thosewho had heart attacks. Adapted from Dorian et al.1,9

See AFIB PERSPECTIVES page 28

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Cardiovascular Nursing, “clinicians may mini-mize the significance of afib to the patientand may fail to provide the level of supportand information needed for self-manage-ment of recurrent symptomatic afib.”5

Such lack of communication may alsoexist because health-care providers don’tfully understand what living with afib is like.Many unique characteristics of afib suggestthat the experience of living with this con-dition may differ from the experience of liv-ing with other heart conditions. For exam-ple, afib affects a more heterogeneous popu-lation than coronary artery disease and heartfailure. Afib patients range in age from lateteens to the most elderly. Up to 30 percentof patients who have afib have no other car-diovascular disease, whereas others havemultiple cardiovascular conditions.5

For those who have the condition, it isphysically exhausting. When an afib episodeconcludes, patients feel like a limp dishrag,and often all they can do is sleep. Duringepisodes, the heart feels like a fish floppingaround in the chest. And the effects gobeyond the individual episodes. Often duringtheir daily lives, patients who are in afib allthe time are fatigued, sometimes lightheaded,and unable to enjoy simple physical activitiessuch as riding a bike or even walking.

The emotional toll of afib is heavy aswell. The patient feels out of control and willdo anything to stop the afib. When askedwhat it’s like to live with afib, patients’ mostcommonly used word is fear. Afib patientslive in constant fear of a stroke or a bloodclot. They also never know what they will bein the middle of doing when an episodestrikes. Those with afib may have to fre-quently cancel plans with family and friendsbecause of episodes and may feel like failuresbecause afib has taken control of their lives.

The financial cost of having afib is alsotremendous. Many afib patients face finan-cial devastation that they may never recover

from. Afib may cause sufferers to miss work,potentially leading to lost jobs and insur-ance. For those self-employed afib patients(like I was), it means you can’t work. Manylose cars, houses, and even their families.

The medical costs for those with afib onMedicare were found to be five times higher

than for those without, averaging almost$24,000 per year, which could have beeneven higher for private insurance. Of thoseexpenses, 62 percent was for inpatient care.Afib patients averaged 67 physician visits inthe first 15 months after diagnosis, and 61percent needed emergency services at leastonce, with an average of three trips.6

Not realizing the effects of afib can leadto that Grand Canyon-sized communica-tion gap. That is why I became an advocatefor those with afib and foundedStopAfib.org.

StopAfib.org: The Primary PatientResource

StopAfib.org launched in 2007. Sincethen, the site has become the No. 1arrhythmia site and the No. 7 cardiovascu-lar disorder site worldwide, according toAlexa, a company that tracks website traf-fic.7 StopAfib.org has received theHONcode seal, from the internationalHealth On the Net Foundation (HON),

certifying it as a trustworthy medical site. The mission of StopAfib.org is to raise

awareness about afib and strokes. Among theorganization’s successes, it created AtrialFibrillation Awareness Month, recognizedevery September. StopAfib.org lobbied onCapitol Hill along with other organizations,and in 2009, the U.S. Senate passed a resolu-tion officially recognizing September asNational Atrial Fibrillation AwarenessMonth.8 Through ongoing efforts, theorganization continues to make the afibpatient voice heard in Washington, D.C., andhas been involved in policy and awareness-raising coalitions and partnerships in theUnited States, Europe, Latin America, andAsia Pacific. In addition, StopAfib.org hasrepresented the afib patient perspective tothink tanks and the U.S. Food and DrugAdministration.

The organization seeks to improve qual-ity of life by supporting and enhancingcommunication between patients and

StopAfib.org features constantly updated informationabout the latest afib research on its News & Eventspage. The page also offers video interviews with doctorswho are on the leading edge of afib research.

The StopAfib.org Patient & Caregiver Resources pagehas a comprehensive collection of links and tools tohelp those with afib.

AFIB PERSPECTIVESContinued from page 26

See AFIB PERSPECTIVES page 30

The StopAfib Atrial Fibrillation Blog provides updatesabout afib-related news and events. A toolbar at thebottom of the page allows the blog to be translatedinto 11 languages.

The Quick Response (QR) code on this card provides afibpatients access to the StopAfib.org mobile site from anAndroid or iPhone. StopAfib.org provides these cards tohealth-care providers to share with patients.

Why Don’t Patients Take Their Meds?

Afib patients sometimes don’t take medications as prescribed. Why is that, and whatcan you do about it?

Patients may not understand why they are taking certain medications or may havemisperceptions about them, such as believing that warfarin is actually a poison. Witha perception that afib “won’t kill you,” they may not have a sense of urgency abouttaking medications. Health-care providers can help by clearly explaining why thepatient needs that medication and what happens if it is not taken as prescribed.

Being aware of cost issues can also help. Costly new drugs can take months forinsurance plan approval, so patients who can’t afford hundreds of dollars out-of-pock-et may not fill prescriptions or may skip doses to stretch them.

Also, the impact of side effects on patients is frequently overlooked when dis-cussing medications with patients. For example, beta blockers are often consideredvery benign by doctors, but not by patients. Fatigue, brain fog, and other beta blockerside effects can significantly impair quality of life, sometimes keeping patients fromexercising, causing weight gain, and making them feel like their brain isn't working.

health-care providers. Through several out-reach efforts, the organization also hopes todecrease afib strokes. Most importantly,StopAfib.org is for patients, by patients.Information about afib is presented in anempathetic, patient-friendly manner.

The organization’s website offers a mul-titude of resources for those with afib. Oneof the most useful sections on the site is the‘Get Started Learning About Afib Guide,’where patients can learn about the condi-tion, why afib is a problem, how it is diag-nosed and treated, and what medication andprocedures are used to treat it.

Also among the extensive resources onthe site is a patient and caregiver resourcespage with links to guidelines, medicationsand other external resources. The site’s‘News & Events’ page includes video inter-views with doctors who are on the leadingedge of treatment and articles about themost recent research. The ‘Afib ServicesLocator’ helps patients find afib doctors andhospitals with afib centers. Such listings arefree, and although currently only offered inthe United States, international doctors andfacilities will be online soon.

This site is wholly interactive as well. Theatrial fibrillation blog features machine-translation into 11 languages, and the patientforums are full of afib patients sharing infor-mation. One of the most useful and handyawareness-raising materials the organizationhas created is the patient card, which doctorscan hand to patients. It also features a quickresponse (QR) code that patients can scanwith an Android or iPhone to connect tothe mobile website in the phone’s browser,which links to StopAfib.org, the blog, dis-cussion forum, Twitter, Facebook, StopAfibYouTube channel, and more.

The Future: Patients and Health-Care Professionals on Same Team

The Grand Canyon-sized communica-tions gap can be bridged. With a greaterunderstanding of afib, health-care providershave the tools to provide more compas-sionate and better care. Specifically, whentalking with afib patients, health-careproviders can incorporate these communi-cation strategies suggested by the afibpatient community: • Think: What if it were me? When dealing

with afib patients, keeping the physical,emotional and financial impact of thecondition in mind can lead to moreempathetic care.

• Adjust to patients. Especially when afibpatients are initially diagnosed, they maynot be up to speed with the risks posedby the condition. Health-care providers

may need to slow the pace of informa-tion to ensure the messages are received.Specifically, the elderly, those with hear-ing loss, or those on beta blockers with“brain fog” have difficulty with speed oraccents, so adjust speaking speed to thepatient.

• Decrease medical jargon. Health-careproviders work in the world of abbrevia-tions and medical terminology, butpatients don't understand this jargon. Beprepared to offer explanations instead ofwaiting for questions, because manywon’t even ask.

• Write down medical terms. Patients can gaina greater understanding of their condi-tion and do additional research whenthey know the precise language used todescribe their condition.

• Set realistic expectations. Describing thepotential outcomes of treatments andmedications allows patients to knowwhat to expect and allows them to adjustaccordingly. Be honest and don’t hide thetruth. For example, some patients are nottold that they might need more than onecatheter ablation.

• Say “I don’t know.” If there is a topic orpatient question that health-careproviders don’t have all the informationabout, let patients know. Patients knowthat afib is complex and that health-careproviders may not have all the answers,and that's OK. Exploring such answerstogether creates a team atmosphere whenaddressing afib.

• Provide credible resources. As patients look toresearch their condition, point them toreputable organizations and reliablesources. Look for resources with theHealth On the Net Foundation (HONcode) seal, which means that the sitesattribute research and are trustworthy.

• Refer patients to StopAfib.org. Through theorganization’s support network, patientscan learn about the condition and sharetheir experiences.

• Request StopAfib.org patient cards. Thesehandy cards allow patients to immediate-ly connect to afib information. In addition to sharing information

with afib patients, here are a few thingshealth-care providers may consider not

saying: • “Afib won’t kill you.” When first diag-

nosed, patients are in shock and can’tprocess the deluge of information. Saying“it won’t kill you” gets in the way of thereal message — that blood clots andstroke can kill.

• “Just get on with your life.” Afib hashijacked the lives of those who have it,and saying that devalues the patient’sexperience. It’s not something that can beignored.

• “Stay off the Internet and only listen to me.”Patients need support from those whohave been there. Be open to patientsbearing printouts and web research.When patients do such research, they feelempowered.

• “I’ll choose your treatment, not you.”Instead, incorporate patients as part of thedecision. Let patients feel in control,because the condition often takes thataway from them. They have to live withthe end results of treatment.

• “You’re just a hysterical female.” Women areopen about feelings, which are often dis-missed and thus they don’t get treated forafib as quickly. Remember, afib is differ-ent for women, especially related to hor-monal cycles. And often women’s symp-toms are dismissed as stress, lack of sleep,or panic attacks.

For more information, please visit:www.StopAfib.org and www.mellaniehills.com

References1. Dorian P, Jung W, Newman D, et al. The impair-

ment of health-related quality of life in patientswith intermittent atrial fibrillation: Implications forthe assessment of investigational therapy. J Am CollCardiol 2000;36:1303–1309.

2. AFib STROKE Survey. Conducted by HarrisInteractive, Tullio M, Lackland D, Willis D,Marrouche N, Nelson-Worel J. April-June, 2010.Sponsored by National Stroke Association,Boehringer Ingelheim Pharmaceuticals Inc.http://afibstrokesurvey.com/afib-stroke-survey-fact-sheet/

3. Out of Sync: The State of AFib in America Survey.Conducted by Yankelovich, Part of the FuturesCompany. March-April, 2009. Sponsored bysanofi-aventis. http://www.afstat.com/AF_Stat_Resources/Out_of_Sync_Survey.aspx

4. Aliot E, Breithardt G, Brugada J, et al. An interna-tional survey of physician and patient understand-ing, perception, and attitudes to atrial fibrillationand its contribution to cardiovascular disease mor-bidity and mortality. Europace 2010;12:626–633.doi: 10.1093/europace/euq109

5. McCabe P, Schumacher K, Barnason S. Livingwith atrial fibrillation: A qualitative study. JCardiovasc Nurs 2011 Jan 21. [Epub ahead of print]

6. Sullivan E, et al. Health Services Utilization andMedical Costs Among Medicare Atrial FibrillationPatients. Avalere Health. 2010:4:1–58.

7. Stopafib.org Site Info. www.alexa.com/siteinfo/stopafib.org

8. U.S. Congress. Senate. Congressional Record.111th Congress. September 11, 2009. p. S9299.http://www.gpo.gov/fdsys/pkg/CREC-2009-09-11/pdf/CREC-2009-09-11-pt1-PgS9296-2.pdf#page=4

9. AF Stat Call to Action for Atrial Fibrillation.AF Stat. p. 10. Sponsored by sanofi-aventis.http://www.afstat.com/docs/pdf/AF%20Stat%20Call%20to%20Action%20Full%20Document.pdf

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AFIB PERSPECTIVESContinued from page 28

Connecting to the afib community is easy through the organization'sFacebook page.

Social Media & Afib

Social media, such as online forums, Facebook and Twitter, has revolutionized howafib patients gather and analyze information about their condition and treatments. Hereis how StopAfib.org is using social media:

• The Atrial Fibrillation Blog (http://atrialfibrillationblog.com) — Patients can read andcomment on afib news.

• Twitter (http://twitter.com/StopAfib) — Tweets from medical conferences givepatients the latest information about treating afib.

• YouTube (www.youtube.com/StopAfib) — Patients can watch videos of doctorsexplaining treatments on the StopAfib YouTube Channel.

• Facebook (www.facebook.com/StopAfib) — The StopAfib.org Facebook fan page pro-vides updates about the latest afib news and events.