‘I don’t wanna live forever’—importance of quality of life in heart failure patients

This editorial refers to ‘Quality of life in heart failure: the heart of the matter—a scientific statement of the Heart Failure Association and the European Association of Preventive Cardiology of the European Society of Cardiology’, by M. Volterrani et al., https://doi.org/10.1093/eurjpc/zwad400. Over the past decades, the prognosis of heart failure (HF) has markedly improved not only due to the introduction of new drugs and device therapies but also by the recognition of the importance of multidisciplinary care, including patient education and exercise training. Reduced exercise capacity is a cardinal sign of HF and has a big impact on quality of life (QoL). Both aspects have, therefore, gained increasing attention and do actually outperform longevity as a main focus in the treatment of HF patients.1 The assessment of QoL appeared on the agenda of the World Health Organization (WHO) at the end of the past century. The increasingly mechanistic model of medicine, concerned only with the eradication of disease and symptoms, needed the introduction of a humanistic element into healthcare, where the patient’s well-being is a primary aim. Furthermore, the focus of traditional health indicators, such as mortality and morbidity towards determinants of QoL, ought to be broadened. While measures of the impact of disease and impairment on daily activities and behaviour, perceived health measures, and measures of disability and functional status received special attention, QoL per se was not addressed in the early phases, which was referred to as ‘the missing measurement in health’.2 In compliance with a holistic approach to health and following its definition as ‘A state of physical, mental and social well-being, not merely the absence of disease and infirmity’, the WHO defined QoL as the ‘individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’.3 This broad ranging concept incorporates in a complex way the persons’ physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationships to noticeable features of the environment. In other words, the concept of QoL aimed to measure the well-being of the population in its various dimensions, including both, material living conditions (income and jobs, housing conditions) and immaterial dimensions (health, education, environmental quality, personal security, civic engagement, and work–life balance). Health status, functional status, and QoL are three concepts often used interchangeably to refer to the same domain of ‘health’. Quality of life instruments used in clinical research can provide important evidence to informed decisions when the primary goal of therapy is to improve how patients feel. Surrogate measures (cardiac function or exercise capacity) were recognized as being inadequate substitutes for direct measurement of QoL and Guyatt introduced the term ‘health-related quality of life’ (HRQoL) because many widely valued aspects of life are not generally considered as ‘health related’.4 Therefore, HRQoL measures the illness experience as opposed to the disease and defines the patient reality, i.e. his or her point of view as opposed to the reality defined by professional medical knowledge.5 To underline the importance of QoL as a target of disease management, the Heart Failure Association of the ESC (HFA) in collaboration with the European Association of Preventive Cardiology (EAPC) published a consensus paper on QoL in HF, particularly addressing exercise intolerance as a hallmark of the HF syndrome.6 Being aware that exercise capacity is only one component of HRQoL, it is one that is objectively measurable and the target of many medical interventions.7 Although drug treatments, devices, or surgical interventions have shown to improve physical capacity to a certain degree, their impact still bears the potential of being potentiated by concomitant or subsequent exercise training in order to take advantage of the improved central haemodynamic status. In this regard, the participation in structured cardiac rehabilitation programmes offers a unique opportunity to fulfil all the requirements of a holistic care of HF patients by further optimizing drug treatment, providing the patient with a save environment after an intervention and addressing all the other components of HRQoL, along with conducting a structured exercise training programme. Slimani et al.8 analysed in a meta-analysis the effects of exercise training on HRQoL, aerobic capacity, and cardiac function in older patients with HF. The main findings were that physical training exerts small effects on HRQoL and moderate effects on cardiac function and aerobic capacity, but that training duration predicted the effects of physical training on HRQoL. While the dose–response relationship of physical training is well known, the moderate impact on HRQoL raises some questions: (i) do we sufficiently address the patient’s needs in our HF management programmes?, (ii) do our instruments measure the right thing?, and (iii) are they sensitive enough and/or appropriate for a wide range of HF aetiologies and patients of different age? These aspects are addressed in the joint position paper of the HFA and the EAPC, and they have to be congratulated for emphasizing the importance of holistic care provided to the patient and his family, starting from the time of diagnosis and maintained until the end-of-life. A main focus of the paper is the listing of disease-specific and non-specific HRQoL questionnaires, giving an overview on their aims and the covered domains in the field of HF. Furthermore, the impact of pharmacologic treatments, cardiac devices, and structural interventions on HRQoL is discussed in detail. Quality of life measures are most valuable when they comprehensively measure aspects that are both, important to patients and likely to be influenced by therapy, when the measurement instruments are valid (measuring what is intended) and responsive (able to detect all important changes, even if small) and when the results are readily interpretable (determining whether treatment-related changes are trivial, small but important, or large).9 These aspects are taken up and discussed in the section ‘gaps in knowledge’ of the position paper, concluding that a new HRQoL questionnaire is needed. Asking patients, what characterizes QoL, they emphasize that the active pursuit of happiness and relationships with others is as important as HF symptoms and limitations in their daily life.10 Therefore, it seems worthwhile considering to incorporate these items into a new questionnaire.