More than half of patients due for replacement of their implantable cardioverter-defibrillator (ICD) generator did not realize they could opt out and many underestimated the risks of ICD replacement, according to a research letter published online July 28 in JAMA Internal Medicine.

Krystina B. Lewis, RN, MN, of the nursing school at the University of Ottawa in Ontario, and Pablo B. Nery, MD, and David Birnie, MBChB, MD, of the University of Ottawa Heart Institute, proposed that the period when an ICD patient’s generator is running low provides an ideal opportunity to re-evaluate needs and expectations. To better understand patients’ awareness of these issues, they invited consecutive patients at the institute to take a survey that captured demographics and perceptions. Researchers also had access to data on patients’ quality of life, psychological and decision-making factors.

To be eligible, patients needed to be older than 18 years, not dependent on a pacemaker and not be using cardiac resynchronization therapy. Between 2009 and 2011, 106 patients completed the survey for a response rate of 72 percent.

Based on responses, 51.9 percent of the patients were not aware that they had a choice when it came time to replace their ICD generator. Of those who did not know it was optional, 27.2 percent responded that they would have considered waiving replacement. Patients who would have considered not replacing their device were older (mean age of 68 years vs. 61 years) but clinical variables were similar between the two groups.

Twenty percent of respondents believed ICD replacement carried no surgical risk and 17 percent perceived there was no risk of surgical infection. Most did not know the estimated annual chance of the therapy being lifesaving.

“Most patients either overestimated the benefits of ICD therapy, underestimated the risks of ICD generator change, or did not know,” the researchers observed.

More than one in four responded that it was important or very important to discuss risk and benefits before deciding whether to continue with ICD therapy. Lewis et al pointed out that such a discussion would allow a patient and his or her physician to review their healthcare goals and reassess their views on risk and benefits. By exploring these topics, physicians can better integrate patient preference into decision-making.  

“[R]eflecting on their experience living with an ICD could lead a patient to decide against replacement,” they wrote.