Released today, a new survey of more than 1,200 physicians, patients with atrial fibrillation (AFib) and their caregivers uncovered important information gaps regarding the impact of AFib-related stroke, including communication barriers, challenges with patient education, misperceptions about treatment compliance, and outcomes related to the impact of stroke on one’s life. The survey was issued by the Heart Rhythm Society (HRS) and National Stroke Association in collaboration with Boehringer Ingelheim (BI), and the findings were presented today during a special session at the American Heart Association’s annual Scientific Sessions in Chicago.
The survey found that the vast majority of physicians surveyed (90 percent) believe AFib patients underestimate the impact of AFib-related stroke on their daily lives, while four in five (79 percent) believe AFib patients are in denial about their risk of experiencing an ischemic stroke. Of equal concern, two-thirds of patients surveyed responded that they were not previously aware that AFib-related strokes are nearly twice as likely to be fatal and 32 percent of surveyed AFib patients who have not experienced a stroke do not believe they would be able to describe the most common symptoms of stroke. Further, the majority of stroke survivors surveyed (61 percent) did not know they had AFib prior to experiencing a stroke.
AFib is the most common arrhythmia, affecting more than 2.7 million Americans, and makes AFib patients five times more likely to have a stroke than people without AFib[i] . AFib-related strokes are nearly twice as likely to be fatal[ii] or severely disabling as non-AFib-related strokes[iii] .
“The survey results clearly demonstrate room for improvement when it comes to doctor-patient conversations about AFib and stroke. We hope our study will not only help raise awareness about the increased risk and severity of AFib-related stroke, but also encourage smart, open conversations,” said David Frankel, MD, FHRS, Assistant Professor of Medicine at the Hospital of University of Pennsylvania and chair of the HRS AF-Impact of Stroke Survey Working Group. “With AFib projected to affect upwards of 15 million Americans by 2050, now is the time to break down these barriers and work towards a common understanding between patients and doctors in order to improve quality of care and, ultimately, prevent stroke.”
Understanding the Devastating Impact of AFib-related Stroke
The survey reinforced that AFib-related stroke has a major impact on the lives of both patients and caregivers. Nearly three in four stroke survivors (73 percent) surveyed say that experiencing a stroke was worse than they could have imagined, and many survivors and caregivers have had to give up jobs, activities or hobbies that brought them joy. Virtually all surveyed physicians (97 percent) agree that AFib-related ischemic stroke can have devastating outcomes for patients and caregivers.
The tremendous toll of recovery from stroke is not limited to patients. Six in seven surveyed caregivers (86 percent) acknowledged that they couldn’t have imagined the amount of work it takes to care for a stroke survivor, and 75 percent of the caregivers noted that the stroke survivors in their care can no longer drive and need assistance with daily activities.
“Being diagnosed and living with AFib can be very overwhelming and challenging. The survey has shown that there are challenges when it comes to understanding the true risks of living with the condition. It’s so important for every AFib patient to learn more about their stroke risk because it could impact the rest of their life. Managing personal risk and recognizing stroke signs and symptoms are crucial,” said Philip Gorelick, MD, National Stroke Association board member. “We are proud to join forces with HRS and BI to encourage everyone to gain a clear understanding of the AFib-stroke connection and help prevent a stroke.”
Breaking Down Barriers to Improve Patient Education
This new survey reveals a perception gap between physicians and patients related to conversations about AFib and the increased risk of stroke. While the majority (85 percent) of surveyed physicians and patients do talk about risk, they disagree about who initiates the conversations. Physicians indicate that they initiate 90 percent of conversations about increased risk of AFib-related stroke and available treatments, yet patients who have discussed the issue with their physicians indicate that they initiate the conversation nearly half the time (47 percent). In fact, just 64 percent of AFib patients surveyed recall discussing an increased risk of stroke due to AFib with their physician at the time of diagnosis.
Furthermore, physicians report challenges to educating patients. When asked about common barriers to patient education, physicians cited the following as the top three perceived challenges:
- Patient feels risk of AFib-related stroke goes away once symptoms are being treated
- Patient thinks risks outweigh the benefits for medications reducing the risk of AFib-related stroke
- Patient has trouble understanding what is being explained
Claiming Different Perceptions of Compliance
Surveyed physicians report differing perceptions of compliance than patients when therapy is initiated to reduce the risk of stroke. One-third of cardiologists (33 percent) and nearly one half of surveyed electrophysiologists (48 percent) identified patient resistance as one of the top three greatest barriers to therapy initiation.
However, 93 percent of responding AFib patients said they would do whatever their physician recommended to them in order to reduce the risk of an AFib-related stroke. Convenience also does not appear to be a barrier to treatment for the majority of patients: 92 percent of AFib patients who have not experienced a stroke indicated it would not matter to them whether they had to take a treatment once or twice a day if it reduced the risk of stroke caused by a blood clot in the brain (ischemic stroke).
Calling for More Information
Collectively, all respondents show an appetite for more information. One in two stroke survivors surveyed (48 percent) are doing everything they can to learn about AFib since experiencing a stroke. Among surveyed caregivers, one in five (21 percent) indicate the person in their care is doing everything to learn about reducing the risk of stroke due to AFib since being diagnosed. Physicians want to help them do this. More than four in five physicians (83 percent) surveyed wish they had more information and educational materials to share with their AFib patients that discuss stroke risk.
As a follow-up to the survey, HRS and National Stroke Association have established a working group of independent medical experts to review the findings and help create a roadmap to improve communication barriers between patients/caregivers and providers. Outputs from this working group will be made available through both organizations in early 2015. In the meantime, more information and resources for understanding and preventing AFib-related stroke are available at www.myafib.org and www.stroke.org .
About the Survey
The Heart Rhythm Society (HRS) and National Stroke Association, in collaboration with Boehringer Ingelheim (BI), fielded a survey in May of 2014 to physicians, AFib patients and caregivers. The purpose of the survey was to measure awareness about AFib and stroke, determine baseline understanding of risk factors, and identify barriers to communication between patients/caregivers and providers. It asked similar questions of physicians, patients with AFib, stroke survivors with AFib and their caregivers to uncover differences in their perceptions of communication about AFib and stroke risk and to shed light on potential treatment compliance barriers. More than 1,200 respondents participated in the survey including 507 physicians, 499 AFib patients, and 203 caregivers of stroke survivors with AFib. The survey marks the first time HRS, National Stroke Association and BI have worked together with the common goal of raising awareness around AFib and stroke.
[i] January CT, Wann LS, Alpert JS, Field ME, Calkins H, Murray KT, Cleveland Jr JC, Sacco RL, Cigarroa JE, Stevenson WG, Conti JB, Tchou PJ, Ellinor PT, Tracy CM,Ezekowitz MD, Yancy CW, 2014 AHA/ACC/HRS Guideline for the Management of Patients With Atrial Fibrillation: Executive Summary, Journal of the American College of Cardiology (2014), doi: 10.1016/j.jacc.2014.03.021.
[ii] Lin HJ, et al. “Stroke Prevention in Atrial Fibrillation: The Framingham Study.” Stroke. 1996; 27:1760-1764
[iii] Dulli D., et al. “Atrial Fibrillation is Associated with Severe Ischemic Stroke.” Neuroepidemiology. 2003; 22: 118-123.