BOSTON—Patients with atrial fibrillation underestimated the risk of stroke but wanted to work with their physicians and caregivers to better manage their disease, according to a survey released on May 13 from the Heart Rhythm Society and the National Stroke Association.

They conducted the survey online or via the telephone between May 27 and July 3, 2014. For completing the survey, patients and caregivers received $10 apiece, while physicians received $20. Boehringer Ingelheim funded the study.

The respondents included 151 general practitioners, 202 cardiologists, 101 electrophysiologists and 53 neurologists. General practitioners, cardiologists and electrophysiologists were required to have treated at least 10 adults with atrial fibrillation per month, while neurologists were required to have treated at least 10 adult stroke patients per month.

Of the physicians surveyed, 97 percent said atrial fibrillation-related ischemic stroke could have devastating consequences, 90 percent said patients with atrial fibrillation underestimated the stroke risk and 79 percent said patients were in denial about stroke risk.

Approximately one-third of cardiologists and electrophysiologists said bleeding risk was a major barrier to prescribing, while neurologists and general practitioners were most likely to indicate monitoring of anticoagulation was the most significant prescribing barrier.

All of the physicians said they prescribed oral anticoagulants to some patients, with electrophysiologists prescribing them to the most patients (88 percent) and general practitioners prescribing them for the least (73 percent). In addition, 79 percent of patients said they sometimes prescribed antiplatelet agents.

More than 80 percent of physicians said they spoke with patients about the risk of stroke and benefits of anticoagulation, while 45 percent said they provided patients with written educational materials, 36 percent said they had a nurse or educator discuss atrial fibrillation with patients and 20 percent said they told patients to read educational websites. However, most physicians wanted better educational materials.

The study also included 248 patients with atrial fibrillation and no history of stroke and 251 patients with atrial fibrillation and a history of stroke or transient ischemic attack.

In the atrial fibrillation only group, 32 percent said they could not identify the most common symptoms of stroke, and only 48 percent said they received written educational materials regarding atrial fibrillation and the increased risk of stroke. However, 87 percent of patients said they wanted to learn as much as possible about atrial fibrillation and reducing the risk of stroke.

Of the patients who discussed strokes with their physicians, 86 percent took antithrombotic medications, with oral anticoagulants being the most common option. Nearly 90 percent of patients said they took their treatments.

The respondents included 35 percent who had experienced a transient ischemic attack only and 37 percent who had survived multiple strokes. Patients who survived strokes were more likely to have been aware of different types of strokes than patients who never had a stroke.

Of the patients who had experienced strokes, 73 percent said their life was worse than they imagined since having the stroke.

Researchers also interviewed 203 caregivers, most of whom were women (84 percent) and a relative of the stroke survivor (88 percent). In addition, 56 percent of caregivers were caring for patients who survived an ischemic stroke, 20 percent for patients who survived a hemorrhagic stroke, 10 percent who survived a combination of ischemic and hemorrhagic stroke and 19 percent who survived a transient ischemic attack.

Within the first six months of patients suffering a stroke, 92 percent of caregivers said they observed motor limitations and 81 percent said they observed cognitive limitations. Beyond six months, 65 percent of caregivers said they observed impaired balance and 58 percent said they observed walking problems.

Further, 92 percent of caregivers said they had significantly more responsibilities since becoming a caregiver and 60 percent said the responsibilities were more than they could handle. Also, 68 percent said their relationship with the survivor had significantly changed and 56 percent said they were socially isolated.