A survey of more than 1,200 physicians, patients with atrial fibrillation (AF) and their caregivers has uncovered important information gaps regarding the impact of AF-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 and National Stroke Association in collaboration with Boehringer Ingelheim. The findings were presented during a special session at the American Heart Association’s annual Scientific Sessions in Chicago, USA.
The survey found that 90% of physicians surveyed believe AF patients underestimate the impact of AF-related stroke on their daily lives, while four in five (79%) believe AF patients are in denial about their risk of experiencing an ischaemic stroke. Of equal concern, two-thirds of patients surveyed responded that they were not previously aware that AF-related strokes are nearly twice as likely to be fatal and 32% of surveyed AF patients who have not experienced a stroke do not believe they would be able to describe the most common symptoms of stroke. Further, 61% of stroke survivors surveyed did not know they had AF prior to experiencing a stroke.
“The survey results clearly demonstrate room for improvement when it comes to doctor-patient conversations about AF and stroke. We hope our study will not only help raise awareness about the increased risk and severity of AF-related stroke, but also encourage smart, open conversations,” says David Frankel, assistant professor of medicine at the Hospital of University of Pennsylvania, USA, and chair of the Heart Rhythm Society AF-Impact of Stroke Survey Working Group.
The survey reinforced that AF-related stroke has a major impact on the lives of both patients and caregivers. Nearly three in four stroke survivors (73%) 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%) agree that AF-related ischaemic 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%) acknowledged that they could not have imagined the amount of work it takes to care for a stroke survivor, and 75% of the caregivers noted that the stroke survivors in their care can no longer drive and need assistance with daily activities.
The survey reveals a perception gap between physicians and patients related to conversations about AF and the increased risk of stroke. While the majority (85%) of surveyed physicians and patients do talk about risk, they disagree about who initiates the conversations. Physicians indicate that they initiate 90% of conversations about increased risk of AF-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%). In fact, just 64% of AF patients surveyed recall discussing an increased risk of stroke due to AF 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 AF-related stroke goes away once symptoms are being treated
– Patient thinks risks outweigh the benefits for medications reducing the risk of AF-related stroke
– Patient has trouble understanding what is being explained.
Surveyed physicians report differing perceptions of compliance than patients when therapy is initiated to reduce the risk of stroke. One-third of cardiologists (33%) and nearly one half of surveyed electrophysiologists (48%) identified patient resistance as one of the top three greatest barriers to therapy initiation.
However, 93% of responding AF patients said they would do whatever their physician recommended to them in order to reduce the risk of an AF-related stroke. Convenience also does not appear to be a barrier to treatment for the majority of patients: 92% of AF 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 an ischaemic stroke.
Collectively, all respondents show an appetite for more information. One in two stroke survivors surveyed (48%) say they are doing everything they can to learn about AF since experiencing a stroke. Among surveyed caregivers, 21% indicate the person in their care is doing everything to learn about reducing the risk of stroke due to AF since being diagnosed. Physicians want to help them do this. More than four in five physicians (83%) surveyed wish they had more information and educational materials to share with their AF patients that discuss stroke risk.
As a follow-up to the survey, the Heart Rhythm Society and National Stroke Association have established a working group of independent medical experts to review the findings and help improve communication barriers between patients/caregivers and providers. Outputs from this working group will be made available in early 2015.