Better Education Needed for Patients with Cardiac Implantable Electronic Devices

31 Oct Better Education Needed for Patients with Cardiac Implantable Electronic Devices

A new study reveals the need for increased patient education on cardiac implantable electronic devices (CIED).  Although patients today have real-time access to data, a new survey shows significant gaps in patient understanding of device use and the impact on their health.  The study was presented last May at Heart Rhythm 2019, the Heart Rhythm Society’s 40th Annual Scientific Sessions in San Francisco.

The results from this survey are the first to report a large discrepancy in patient’s knowledge of their CIED. The researchers reviewed patients’ overall knowledge of medical data from their devices as well as their perceptions on what is most important. The study’s participants want to better understand their electronic device and its data, with more guidance on battery life as the most important aspect for these patients.

A Pace Maker, a Cardiac Implantable Electronic Device Photo Credit: U.S. National Library of Medicine

According to a 2011 article that appeared in the American Heart Association’s Circulation  (2011;123:e18-e209), cardiac arrhythmias impacts an estimated 14.4 million patients in the United States.  CIEDs has become the favored treatment option for these patients, with more than 300,000 Americans receiving new CIED implants every year., says another article published in the Journal of the American College of Cardiology (58:1001–1006).

Enhancing Knowledge of Patients with CIEDs

 As new technology emerges, patients have greater or unprecedented access to real-time data and information about their health from their devices, say the researchers.  However, they note that there is a need to better understand patients’ knowledge of their devices and their perceptions of what data elements are most important.

The Cleveland Clinic researchers noted that this study initially screened 400 patients between July and December 2018 who attended an inperson device evaluation at the Cleveland Clinic outpatient clinic. The mean patient age was 62.9±12.8 years and 64 percent were male. Patients received a one-page questionnaire asking multiple choice questions in seven basic categories: type of CIED, original indication, functionality, manufacturer, number of active leads, estimated battery life and number of shocks. Their answers were then compared to their interrogation report to assess accuracy. Patients were also asked to share what data would be most important to them as the device user.

“Our research uncovered a discrepancy between patients’ perception of their own knowledge of their devices and their actual knowledge about their device. While some patients have lived with these devices for years, our results show that there is still a general lack of knowledge,” said lead author Divyang Patel, M.D., Cleveland Clinic, in a May 7 statement. “As digital health evolves, patients are able to access their own health data in real time. By equipping device users to be active participants in their health, we hope they will be able to utilize their own data and be empowered to be more engaged in their care and live a healthier life,” he said.

In this cohort, 344 or 86 percent of patients agreed to take the survey. From this group, 62 percent agreed or strongly agreed that they were knowledgeable about their device, however, 84 percent missed at least one question. 48 percent of survey participants missed at least two questions about their device. Patients agreed or strongly agreed that they had a desire to have more information regarding each of the following: battery life (81 percent), activity level (76 percent), heart rate trend (73 percent) and ventricular arrhythmias (71 percent). The results of this study show a discrepancy in patients’ knowledge regarding their CIEDs and their wish to better understand the device.

Adds senior author Khaldoun Tarakji, M.D., MPH, FHRS, Cleveland Clinic, “Despite the advancement in remote monitoring of CIEDs, up until recently it has been a process between clinicians and manufacturers, with patients on the receiving end. Now that patients have access to data in real time, especially with the advancement of digital health technologies and increased use of smart devices, we need to help guide patients, clinicians, and manufacturers on how to make the most out of their information to help advance patient care and lead to positive outcomes.”

“Our study is one of the first to give insight into the voice of the patient and what they desire to know,” says Tarakii, calling on the physicians along with device manufacturers and medical societies to work together on a plan to provide education to  patients with CIEDs.