The HeartQoL questionnaire is valid for use in implantable cardioverter defibrillator recipients.. What does this mean for clinical practice?

Implantable cardioverter defibrillators (ICDs) are designed to directly treat ventricular tachyarrhythmia by pacing and/or delivering defibrillation shocks in order to restore the heart rhythm. Whereas ICDs were initially implanted only in patients who had survived cardiac arrests and where pharmacological therapy failed, they are now recommended not only in secondary but also in primary prevention of sudden cardiac death.1 In secondary prevention, the use of ICDs has been shown to be effective, regardless of the type of underlying heart disease. When individuals are at risk for sustained ventricular tachycardia, ventricular fibrillation or cardiac arrest, an ICD can be indicated as primary prevention measure. This is, for instance, the case in hypertrophic cardiomyopathy. Hypertrophic cardiomyopathy in adults is characterized by an abnormal thickening of the left ventricular wall that is not explained by other causes, including hypertension or aortic stenosis.2 The patients often suffer from dyspnoea, chest pain, dizziness, syncope and palpitations, which are exacerbated by physical effort.2,3 The symptoms associated with the underlying heart disease affect patients’ wellbeing and health-related quality of life (HRQL)4 and, on top of that, ICD recipients need to deal with their special condition, which also hugely impacts on the patients’ perceived health and quality of life. Indeed, the increased risk for sudden cardiac death as well as the fact that the device can in rare cases trigger inappropriate shocks, poses a very particular stressor on the individual. As such, ICD therapy may have psychological consequences and may lead to a reduction in HRQL.1 For these reasons, regular follow-up of ICD recipients should also include an evaluation of symptom burden, functional status and HRQL,5 as is becoming more and more desired in the era of patient-centred care. In this sense, Wong et al.6 investigated the factors associated with quality of life in ICD patients. By using the Short Form-36 Health Survey, their findings showed that depression was a common factor affecting the physical and mental quality of life of ICD recipients. From the clinical point of view, these questionnaire results6 are important to take into account and might be useful for clinical decision-making. Indeed, according to the American Heart Association,5 most aspects of patients’ perceived health status are best captured by patient self-report. HRQL reflects how an individual views and adapts to the disease related symptom burden, functional limitations and prognosis, as well as how patients perceive their overall health.5 However, considering the disease particularities rather than using a generic HRQL evaluation tool, a specific HRQL tool might be needed to better understand the relationship between HRQL and disease. To assess disease-specific HRQL, valid and reliable instruments in specific populations are needed that are valid and reliable in specific populations. Aiming at evaluating an existing HRQL measurement tool for use in a population of ICD recipients, Zangger et al.7 investigated the psychometric properties of HeartQoL, as can be found in this journal issue. The HeartQoL is a core ischaemic heart disease-specific HRQL questionnaire. Before the study of Zangger et al.,7 HeartQoL had been found to be valid and reliable in patients with angina, myocardial infarction and heart failure,8 stable coronary artery disease9 and atrial fibrillation.10 Given the very specific burden of ICD recipients, it was clinically relevant to investigate the HeartQoL for use in this population. As such, Zangger et al.7 showed that the Danish HeartQoL questionnaire has satisfactory key psychometric attributes of validity and reliability in ICD recipients. The authors conclude that the HeartQoL seems to be applicable for patients with heart disease, including the ICD population, as such, allowing cross comparisons with other cardiac patient groups. Patient health status is an important predictor of health outcomes such as mortality, cardiovascular events, hospitalization and cost of care.5 Thus, the validation of the HeartQoL for ICD recipients7 was important given that this tool can now be used to inform clinical decision-making, target healthcare resources and enable surveillance of disease burden. However, the questionnaire has not been adapted to become more specific for the ICD population, and as such to be even more useful in the context of following up these patients long term and to allow maximal personalization of care by targeting the patients’ individual needs. As the main aim of HRQL surveys is to give support to the current patient management and improvement of HRQL, specific disease tools are considered more appropriate if the focus is to investigate the outcome in some specific populations, such as ICD recipients. In fact, the literature is still scarce about HRQL in ICD recipients, even more so if we consider the application of specific questionnaires, such as the HeartQoL. While this validation study of Zangger et al.7 is a first and important step forward, studies are needed to further investigate quality of life related issues that ICD patients are dealing with. Such studies might further identify patients’ needs, give direction to treatment strategies and drive the development of an ICD-specific patient-reported HRQL evaluation instrument. By having questionnaires developed and/or validated for specific populations (e.g. ICD) tools are becoming more and more available that allow a broader usage of patient reported health outcomes. Also, the American Heart Association5 advocates for the broader inclusion of patient-reported health status as a key measure of (cardiovascular) health in clinical research, clinical practice and disease surveillance. Despite that, the usage of patient-reported health status information is still limited to research settings and is only scarcely applied in clinical practice. However, the existing and increasing evidence should support clinicians to systematically start using patient reported HRQL as a means to incorporate patient perspectives and experiences to enhance clinical decision-making. To conclude, we would like to congratulate Zangger et al.7 for moving us forward with the validation of HeartQoL for ICD recipients and we are encouraging the scientific community in this field to take up the usage of this evaluation tool, especially when comparison with other heart disease patient groups is the target. Further, we would like to highlight the need for more disease-specific questionnaires and emphasize the fact that a questionnaire is just a tool, not a replacement of the face to face consultation between patient and healthcare provider. The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The author(s) received no financial support for the research, authorship, and/or publication of this article.