Modern-day patient challenge: manage cardiac disease, accept devices, and minimize distress

This editorial refers to ‘Poor health status and distress in cardiac patients: the role of device therapy vs. underlying heart disease’ by M. Habibović et al., on page 355 Chronic heart failure (CHF) patients encounter a host of challenges as they strive to prevent premature death and morbidity from CHF. Specifically, CHF patients face barriers to optimal quality of life in the form of symptoms such as fatigue, dyspnoea, swelling, nausea, and irregular heartbeats; adherence to strict medication, drug, physical activity, and monitoring regimens; and often requirement to accommodate a device therapy. In fact, in an examination of patients with CHF, chronic obstructive pulmonary disease (COPD), and stage IV cancers, CHF patients had similar quality of life (QOL), worse functional status overall, worse anxiety levels, and depression levels similar to COPD patients and worse than those with stage IV cancers.1 The modern challenge of managing the threats of chronic disease to survival and quality of life can be overwhelming for patients and families. Anxiety and depression, in particular, are highly prevalent in CHF patients, with studies finding clinically significant depression in 10–60%2 of patients and clinically significant anxiety in 11–45% of patients.3 These co-morbidities undermine treatment in CHF and negatively affect survival via non-adherence.4–6 The worldwide population dynamics of the baby boomers ageing demand for greater clarity about contributions of CHF and its frequent co-morbidities to mental health and QOL outcomes. Modern multiple treatment modalities of medications and devices are welcome state-of-the-art interventions against this pressing health threat. However, daily living with CHF has a significant disease burden that may be underestimated, as our current medical approaches focus on optimizing the function of technology, up-titrating medications, and claiming collective success if hospital readmissions in the short run are avoided. These medical approaches are critical to success but they are not sufficient to understand how CHF impacts on the quality of life of our patients. Psychological distress can sometimes be a ‘don't ask, don't tell’ phenomenon in cardiology clinics where time demands and efficiency are premiums. In this issue of the journal, Habibovic et al.7 provide a clever use of multiple registry methodologies across hospitals in the Netherlands to distinguish the relative impact of CHF and implantable cardioverter-defibrillators (ICDs) on health status and distress. Their comparisons between three groups of patients: CHF group with no ICD vs. CHF group with an ICD vs. ICD group with no CHF provide a unique insight into the generic QOL and global psychological distress of these groups. Specifically, the authors demonstrated that the CHF group with no ICD reported worse mental QOL and the worst anxiety at 12 months compared with the two ICD groups. These results help to reduce the onus of the ICD as a ‘double agent’ that provides a mortality advantage against potentially life-threatening arrhythmias, but produces some increased anxiety presumably related to its potential to deliver appropriate and inappropriate high-energy shocks. Review of the group means and effect sizes between groups suggests that effects on mental QOL were larger than on anxiety and depression alone. The current data using group means do not address the percentages in each group that have clinically significant psychosocial distress as noted above. Successful management of CHF represents the new ‘modern day challenge’ for patients and optimally utilizing all of the treatment modalities including ICDs is the task. In short, the study by Habibovic et al. suggests that the distressing aspect may be the management of CHF, not the device. These results are encouraging that the ICD specific issues appear to be better managed in clinics in Europe and include such aspects of an ICD shock plan, supportive education for patients and spouses, and activity re-engagement planning.8 Improving the patient acceptance and experience with the ICD using these strategies has been a focus of research groups around the world. This research provides evidence that the burden of underlying disease does distinguish patient groups receiving similar treatment. However, the conclusions of this study should be viewed in the context of several methodological limitations. First, the article concludes that psychological well-being does not seem to be negatively influenced by the implantation of an ICD. This conclusion is promising but would require either prospective pre- to post-implant design or randomization to make a similar conclusion. Groups were inherently different at baseline, with ICD patients in their first year following implantation of an ICD and CHF patients who had substantially more time to gain comprehension of the implications and challenges of the disease state. Therefore, the full impact of device implantation cannot be addressed. Second, the current study did not address the presence or absence of history of the key adverse effects of ICDs such as shock (appropriate or inappropriate) or field advisories/recalls. Because only generic health outcome measures are possible in the current study, we are not able to determine the device-specific concerns such as shock anxiety that may be present but not adequately tapped by generic measures of QOL and distress. While cardiac condition and disease severity are highly important when considering patient well-being, the potential to overlook the effect of ICD-related concerns and shock is misleading as legitimate distress may be dismissed or ignored. Psychological distress is a definitive problem in CHF. Literature reviews and meta-analysis consistently indicated that no less than 20% of ICD patients and as many as 33% of CHF patients experienced diagnosable psychological problems in point-prevalence studies.3,9 The disease burden, patient burden, and necessitated adherence across a range of difficult to change behaviours are high. The current movement focused primarily on the nursing literature involving CHF self-care is promising.10 Cognitive behavioral therapy may also be beneficial in addressing psychological co-morbidities which complicate CHF treatment adherence.11 Easily accessible interventions that can attend to patient change and patient distress will continue to be needed to address this group of patients. We have advocated for many years for the regular evaluation and treatment of psychosocial functioning of ICD patients,12 and interventions focused on ICD specific adjustment have been successful.13 This is consistent with a larger model of health termed the biopsychosocial model that is entirely consistent with most conceptual and measurement models of quality of life. Recent research has seen increased attention to specific sub-groups of ICD patients such as arrhythmogenic right ventricular cardiomyopathy, Brugada, and long QT syndromes. The current study would suggest that it is time to further focus on CHF subgroups within ICD studies to more closely examine what aspects of the patient experience of CHF can be modified to reduce distress. Collectively, this article pushes the body of ICD psychosocial literature to evolve with regard to consideration of the heterogeneous set of conditions prompting ICD implantation. Patients with ICDs have diverse backgrounds, ranging from arrhythmia to CHF, face unique challenges, and require a different set of lifestyle and pharmacological treatments. It is not surprising that these disparate disease-related consequences have distinct patient-reported outcomes. Research on the difference between these groups can inform policy and practice. However, as we embark on research to develop a more nuanced understanding of patients, we must remember that the distress experienced by CHF patients does not go away with implantation with an ICD. While the CHF and ICD group was less distressed than the CHF only group, both groups likely continue to experience distress at a greater rate than the general population. Distressed patients in all groups (CHF only, ICD only, and CHF plus ICD) require individually tailored medical and psychological care that addresses both the underlying disease state as well as the potentially distressing side-effects of pharmacological and device treatment. Conflict of interest: J.C.l and J.F. do not have any conflicts of interest.