Implantable cardioverter-defibrillators (ICDs) have changed the way patients with cardiac arrhythmias are evaluated and treated. Asymptomatic patients often receive ICDs as part of a primary prevention strategy, but there is potential for post-implantation complications, most notably anxiety and psychosocial changes. In addition, ICD recipients are typically older and have comorbidities that serve as competing risks for mortality.
Primary prevention strategies are indicated for patients who have not had a sudden death event or symptoms of life-threatening arrhythmias. In secondary prevention, patients have already experienced life-threatening events. Survival benefits are more likely to occur when ICDs are implanted for secon-dary rather than primary prevention. An important problem, however, is that currently available screening modalities to identify patients at risk for sudden death are lacking.
“Making the decision to get an ICD is clearly a life-changing event for patients,” explains Paul J. Hauptman, MD. “Physicians need to explicitly discuss the benefits of these devices with patients and also educate them about risks beyond those of the implantation procedure itself.” Few studies, however, have addressed the information exchange between physicians and patients on pertinent issues with ICDs. These include discussions on the risks and benefits as well as potential consequences for quality of life (QOL).
Exploring Information Exchange on ICDs
Dr. Hauptman and colleagues had a study published in JAMA Internal Medicine that examined patient–physician communication at the time decisions were made to implant ICDs. Focus groups with recipients of ICDs were conducted to address the nature of pre-implantation discussions. The content and style of communication from cardiologists was observed when they met with standardized patients—people who were trained to act as real patients—to simulate a real patient encounter. The study recruited 41 patients with ICDs and 11 cardiologists. In total, eight patient focus groups and, separately, 22 standardized patient interviews with cardiologists were analyzed.
“More training is necessary so that cardiologists address QOL issues and ensure that patients are equipped to make informed decisions about their health.”
According to the results, cardiologists frequently failed to address or minimized QOL issues and long-term consequences of ICD placement, including risks for depression, anxiety, and the inappropriate delivery of shocks or device advisories (Table 1). “This can leave many patients misinformed about how ICDs may affect QOL,” says Dr. Hauptman. “Cardiologists also tended to use medical jargon or not fully explain medical terms during patient consults.” Patients often reported that their physicians described ICDs as a safety net, calling it absolutely necessary. As a result, many patients had unrealistic expectations of what the ICD was going to accomplish.
In analyses of patient recall, most participants could not remember having a discussion about periprocedural or long-term complications after ICD implantation (Table 2). On a scale of 1 to 10—with 1 being not at all informed and 10 meaning patients had all the information they needed or wanted—the average rating of the degree to which patients felt informed before the implant procedure was 5.7.
A negative perception on body image and lifestyle was also prevalent, according to the study. “Multiple patients reported experiencing depression, anxiety, and changes in body image, but cardiologists rarely discussed these issues,” says Dr. Hauptman. “Discussions on the effect of ICDs on QOL were typically prompted by standardized patients. Without this prompting, it’s possible that more of the interactions would have ended without meaningful discussion of important QOL issues.”
Changing Discussions for the Better
Patients with ICDs often have coping and adjustment issues after these devices are implanted, in addition to depression, anxiety, and other problems. They are also frequently uninformed and overly optimistic about expectations for the future. “Our data provide further insight into the patient experience,” Dr. Hauptman says. “More training is necessary so that cardiologists address QOL issues and ensure that patients are equipped to make informed decisions about their health. As expensive, complicated, and invasive technologies like ICDs are used more frequently, it’s imperative that we ensure that patients have everything they need to make an informed decision.”
For the future, Dr. Hauptman recommends that researchers develop and validate tools and resources to help physicians counsel patients about ICDs in a more systematic, judicious, and transparent manner. “We need to ask the appropriate questions to help identify patients who might be at risk for decrements in health-related QOL following their procedure,” he says. “This requires a greater focus on patient–physician communication. The content of our discussions with patients should be more fully developed. It’s likely that communication skills can be taught in a formal educational initiative, with favorable effect on patients, as has been witnessed in other fields of medicine.”
Readings & Resources (click to view)
Hauptman PJ, Chibnall JT, Guild C, Armbrecht ES. Patient perceptions, physician communication, and the implantable cardioverter-defibrillator. JAMA Intern Med. 2013;173:571-577. Available at: http://archinte.jamanetwork.com/article.aspx?articleid=1653995.
Epstein AE. Update on primary prevention implantable cardioverter-defibrillator therapy. Curr Cardiol Rep. 2009;11:335-342.
Gibson DP, Kuntz KK, Levenson JL, Ellenbogen KA. Decision-making, emotional distress, and quality of life in patients affected by the recall of their implantable cardioverter defibrillator. Europace. 2008;10:540-544.
Palacios-Cen˜a D, Losa-Iglesias ME, Alvarez-Lo´pez C, et al. Patients, intimate partners and family experiences of implantable cardioverter defibrillators: qualitative systematic review. J Adv Nurs. 2011;67:2537-2550.
Matlock DD, Nowels CT, Masoudi FA, et al. Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study. Pacing Clin Electrophysiol. 2011;34:1634-1644.
Stewart GC, Weintraub JR, Pratibhu PP, et al. Patient expectations from implantable defibrillators to prevent death in heart failure. J Card Fail. 2010;16:106-113.