Cardiac Psychology, and New Research in the Psychological Care of Device Patients Following ICD Shock

In this interview, EP Lab Digest speaks with Samuel F. Sears, PhD about his research in the psychological care and quality of life outcomes of ICD patients. Dr. Sears is the Director of Health Psychology and Professor in the Departments of Psychology and Cardiovascular Sciences at East Carolina University in Greenville, North Carolina.

What is cardiac psychology? When and why did you begin your research in this area?

Cardiac psychology refers broadly to the evaluation and treatment of emotional and behavioral aspects of heart disease. My work has focused primarily on the psychology of cardiac electrophysiology.

The success of cardiology to allow patients to survive cardiac events is a phenomenon of the last few decades. Since patients live longer with heart disease, they have to cope longer. Understanding the processes and strategies necessary to manage the stresses and changes that cardiac disease brings is critical to minimize the wear and tear on patients and families and maximize quality of life outcomes.

Why is it important to focus on the psychological care for patients with ICDs?

Cardiac electrophysiology has the technology. Devices and ablation have been fantastic advances from a technical perspective. For patients, the psychological demands are sizeable. Patients are asked to accept the condition and the treatments and to return to their daily lives with confidence. The conditions that EP teams treat on a daily basis are both potentially dangerous and serious. I believe that the effectiveness of EP teams is to help patients extract the feeling of “danger” from the “serious.”

I became involved in EP teams after working on cardiac transplant teams early in my career. Working collaboratively with cardiologists such as Dr. Jamie Conti at the University of Florida, we became convinced that implantable cardiac devices were likely going to be a continuing trend in cardiology. More importantly, I saw that ICD patients were attempting to tackle brand-new coping challenges. The idea of living with potentially life-threatening arrhythmias and receiving a life-saving high energy shock was clearly a challenge that had not been encountered before by patients. The emotional and behavioral consequences were important to all stakeholders.

What percentage of ICD patients experience psychological distress following device implantation or shock?

Almost three decades of research has highlighted that most ICD patients report desirable health outcomes following ICD implantation. However, ICD patients also report rates of psychological distress such as depressive disorders (11-28% via clinical interview and 5-41% via self-report) and anxiety disorders (5-41% via clinical interview and 8-63% via self-report). Post-traumatic stress disorder rates are approximately 20%.¹

The confounding of significant cardiac disease and the implantation of an ICD makes pinpointing the origin of this distress difficult. However, multiple studies from Susanne Pedersen’s lab have tended to put much of the burden on the disease vs the device.²

We have focused on posing the question with more precision to target psychological and adjustment challenges that could be addressed in a typical EP clinic by cardiologists and allied health professionals.

For example, shock anxiety, cardiac health literacy, and sedentary behavior due to fear can be addressed in the EP clinic. These issues do not represent personality or psychological conditions per se. Shock anxiety, related to specific concerns and fears related to future ICD shock, occurs in 44% of ICD patients, according to Ingrid Morken.³ Our tool, the Florida Shock Anxiety Scale,⁴ is brief and easy to use in clinic to guide clinical attention to the issue. Cardiac health literacy involves teaching patients about how their heart works and reduces some of the unnecessary fears and myths that come with worry. Finally, ICD patients can disengage both mentally and physically if they do not feel safe. It may manifest as physical inactivity or emotional withdrawal. The primary antidote to this is reassurance with data/experience and re-engagement with activity and social situations. Patients need to know that they are generally safe to fully engage in life, with few specific limitations.

What negative changes in behavior or activity levels do you find in patients who experience an ICD shock?

Our work has consistently focused on how ICD shocks or other adverse cardiac events tend to prompt changes in thinking, behavior, and self-perception. Changes in thinking, such as catastrophizing (expecting the worst possible outcome), avoidance behavior (withdrawing from normal activities of life), and hypervigilance (actively monitoring body symptoms and changes) are common responses to cardiac events. These common responses lead to physical and psychosocial dysfunction, and tend to extend the periods of distress. We actively assess these aspects when we are referred cardiac patients for psychosocial evaluation. Figure 1 is a working model of some of the key variables when we provide consults with patients.

Why is it also important to evaluate anxiety and depression in the ICD patient’s spouse/partner as well?

ICD spouses and partners play a critical role in the process of adjustment for ICD patients. We have much better data now to indicate that ICD patients and partners adjust better when they are both educated and co-participate in psychoeducational care. Cindy Dougherty and colleagues at the University of Washington recently published research that guides our thinking.⁵ One surprise finding was that spousal distress persists, even as the patient gets better. Historically, we have known that spouses have a higher rate of prevalence of anxiety and depressive disorders than patients themselves. The challenge in clinic is that we recognize the spouse is in distress, but often, the ability to address it is quite limited. Nonetheless, finding ways to help spouses increase their confidence and get support will improve patient outcomes.

What pre-shock strategies can be implemented in patients to help reduce shock anxiety and improve QOL?

ICD patients benefit from a host of strategies, such as good information, a shock plan, an activity plan, and a communication plan. We like to call these “standard operating procedures” so that all patients receive some information on each of these plans. Patients can then tailor a plan to fit their lifestyle.

Additionally, what methods can be used for improving the post-shock experience in both patients and their spouses? What factors contribute to improved acceptance and QOL?

Shock is the distinguishing factor for ICD patients from all other heart patients. We emphasize to ICD patients that there was nothing they did — or can do — to prevent shocks, other than good self-care (taking medications, having a healthy lifestyle, participating in remote monitoring) as directed by their physician.

The idea that emotional stress causes shocks creates emotional stress. Emotional stress is part of the human experience. Recent research from Rachel Lampert’s lab recently indicated that the presence of beta blockers dampens the arrhythmogenic effects of emotional stress.⁶ Clinically, we’ve suspected this for a long time, but this data confirms this is at least related to atrial conduction. We still consider emotional triggers and emotional distress as important for their own sake. I don’t think “piling on” emotional stress as a shock prevention strategy makes much sense. Both maintaining physical activity and managing emotional stress remain important to ICD patients and should be encouraged in general.

Describe the protocol used for psychological care of ICD patients at the East Carolina Heart Institute at ECU. What outcomes have been seen?

Here at East Carolina, we’ve been fortunate to have physicians that valued comprehensive care for all patients in the electrophysiology clinics. Over the past 12 years, we’ve had an “elbow to elbow” cardiac psychology service with the electrophysiology service. Our clinic is embedded in their clinic. Patient symptomatology in EP can be frightening. Whether we’re talking about the onset of symptomatic atrial fibrillation or the experience of an ICD shock, these arrhythmogenic conditions produce an anxiety reaction and fear about a foreshortened future. Clearly, the threat of a stroke or ICD shock, or even syncope, can produce fear in the vast majority of patients.

Frankly, I am surprised that most EP clinics have not strongly engaged in psychological care to help their clinics run smoother and become more patient-centric in their approach.

Tell us more about the Cardiac Psychology Lab at ECU. What ongoing research is currently taking place?

The Cardiac Psychology Lab at East Carolina University has a number of key foci, evaluating ICD patients, atrial fibrillation patients, new technologies, and physical activity in the post cardiac event patient. Our research goals are broad because of the needs across cardiology to evaluate and treat the psychological and behavioral needs of cardiac patients.

What are your most significant findings from recent studies?

The future work of our lab will focus on the role of accelerometers in detecting the movement of patients with electrophysiological disorders. For example, our PainFree Smart Shock Technology (SST) clinical trial followed 2770 patients for approximately 2 years.⁷ In this data set, we were able to show that the average amount of activity level for ICD patients in a multinational sample was 185 minutes daily.  We further examined the effect of shock on daily activity level in these patients. The results indicated that patient activity drops dramatically after the occurrence of an ICD shock and that it stays suppressed for almost 3 months after a shock. In addition, shock anxiety remains elevated for almost 2 years following a shock. This was somewhat of a surprise, because previous work with generic measures of quality of life had generally shown that shock had about a one-month effect on general quality of life. These data show that more precise examination of fears around the antecedents or consequences of ICD shock are heightened, and remain heightened, without intervention. It may serve as a call to action for the electrophysiology community, because our ability to target inappropriate shocks is nearing optimal levels. We’ve suggested that about 4-6% of typical primary prevention ICD patients will get shocked per year with a few considerations.⁸ As a result, overall exposure shock is down. However, the recovery curves for shock are unaffected unless we do more to mitigate the natural disengagement process following adverse cardiac events.

What do you see in the future for patient-centric outcomes in cardiac EP?

Cardiac EP is among the medical disciplines most likely to be impacted by both the consumer “wearable” market and the advent of artificial intelligence. The future of wearable technologies that integrate cardiac signals with patient activity is here now. However, no one knows what to do with it all yet. I believe that wearables will impact patients in both positive and negative ways. It may enhance the perceived control over their condition by being able to “see” their heart rhythms, but it may also have some patients worrying about the relatively benign or totally benign changes in function. The integration of patient behavior and “out of clinic” daily functioning information is potentially valuable. However, we are going to need empirically derived data honing so that we are not just overwhelmed. Given the strengths of the EP community in remote data management, we are likely as ready as any branch of medicine to collectively manage it all.

What do you enjoy about your work in cardiac psychology?

Cardiac patients benefit from the best of technology and care in cardiac electrophysiology. I enjoy creating a “coping approach” to the experience. It is unsettling to have cardiac arrhythmias of any sort. Patients can feel symptoms that they believe will hasten their death. They are often completely unfamiliar with every aspect of the condition and the treatments. It is overwhelming. I like bringing a respectful and empathic approach to patients. They respond well to the blend of technology and empathy. This can empower them to make sense of the cardiac events and start to see a future again. I am honored to be “in the trench” with patients and providers in EP with strategies to minimize the negative aspects and pursue the positive changes.

Beyond clinical work, I have enjoyed the dogged pursuit of research answers to improve the quality of life and psychological experience of ICD patients. My research work creates invitations to broadly participate in educational sessions and grand rounds for doctors, nurses, and patients all over the world. ICD support groups or “ICD patient celebrations” still provide a great source of education and support. I am honored to provide presentations on our work to impact patients and providers toward maximizing quality of life outcomes for patients. 

1. Dornelas EA, Sears SF. Living with heart despite recurrent challenges: psychological care for adults with advanced cardiac disease. Am Psychol. 2018;73(8):1007-1018.
2. Habibovic M, Versteeg H, Pelle AJ, Theuns DA, Jordaens L, Pedersen SS. Poor health status and distress in cardiac patients: the role of device therapy vs. underlying heart disease. Europace. 2013;15(3):355-361.
3. Morken IM, Isaksen K, Karlsen B, Norekvål TM, Bru E, Larsen AI. Shock anxiety among implantable cardioverter defibrillator recipients with recent tachyarrhythmia. Pacing Clin Electrophysiol. 2012:35(11):1369-1376.
4. Kuhl EA, Dixit NK, Walker RL, Conti JB, Sears SF. Measurement of patient fears about implantable cardioverter defibrillator shock: An initial evaluation of the Florida Shock Anxiety Scale. Pacing Clin Electrophysiol. 2006;29:614-618.
5. Dougherty CM, Thompson EA, Kudenchuk PJ. Patient plus partner trial: a randomized trial of 2 interventions to improve outcomes after an initial implantable cardioverter-defibrillator. Heart Rhythm. 2019;16(3):453-459.
6. Lampert R, Burg MM, Jamner LD, et al. Effect of beta-blockers on triggering of symptomatic atrial fibrillation by anger or stress. Heart Rhythm. 2019;16:1167-1173.
7. Sears SF, Rosman L, Sasaki S, et al. Defibrillator shocks and their impact on objective and subjective patient outcomes: results from the PainFree SST clinical trial, Heart Rhythm. 2018;15:734-740.
8. Sears SF, Whited A, Volosin KJ. Enhancing patient care by estimation and discussion of risk for ICD shock. Pacing Clin Electrophysiol. 2015;38(1):1-7.