How your patient is really feeling: the emotional hinterland of a cardiac diagnosis

Cardiovascular disease (CVD) comprises a heterogenous and prevalent group of diseases for which a variety of treatment strategies are available. There is, however, a massive gulf between the success of these treatments from a clinical perspective and the patients’ perspectives of a positive outcome. For clinicians, the primary aim of treatment is to improve overall cardiovascular function and optimize prognosis. As patients, we tend to trade-off the compromises forced on us by a given treatment against the life we are reconciled to live. After the initial cardiovascular diagnosis or event, patients are confronted with physical and/or lifestyle limitations, which almost always have psychological, and other, implications. Moreover, patients often experience cognitive strain, triggering self-doubt and rumination, necessitating broader support than that offered by cardiologists.1 Addressing this need requires an integrated care approach where patients may access timely, context-specific support distinct from that offered in scheduled cardiology appointments. Follow-up of cardiovascular patients should therefore always be multidisciplinary, focusing on patient-defined quality of life (QoL), remaining available throughout the patient’s life in order to support long-term mental stability. While not a novel observation, we take it upon ourselves as patients, and members of the European Society of Cardiology (ESC) Patient Forum, to emphasize this unmet need for cardiovascular patients. Here, we seek to inform clinicians, policy-makers, and funders of what we feel is needed to improve QoL, societal (re-)integration, and overall happiness. We are in it for the living, not solely the surviving. Upon diagnosis/event, the patient is confronted with having to self-identify within a dramatically changed context, profoundly different from life previously and from that of peers, and analogous to receiving a cancer diagnosis.2 For a patient to come to terms with a diagnosis or an event, he or she must ‘travel’ the Kübler-Ross change curve3 (KRC), a model describing the response to a terminal diagnosis. Cardiovascular patients need not go through every stage of the KRC, nor pass each stage in order; however, it should be a universal goal to reach the last stage of the curve and (re-)integrate into a qualitative life, whatever their personal definition of a qualitative life may be. Notably, CVD is a progressive disease, associated with recurrence, comorbidities, and a need for multiple interventions. Consequently, many patients are re-challenged by the KRC. Sadly, it is not just medically related aspects that put patients through these Kübler-Ross repetitions; setbacks in everyday life and mundane situations (Figure 1, top part), such as professional and private life, exercise, mobility, diet, family planning, and finances—in fact any part of life—can be a burden because of CVD and can initiate new KRC iterations or prolong an ongoing curve. It is perhaps no surprise that a high incidence of mental and emotional health difficulties in CVD patients have been described on numerous occasions4 and are mentioned explicitly in recent ESC guidelines.5,6 Cardiovascular disease support team on standby. A mobile phone screen depicting especially demanding life situations for cardiovascular disease patients that impact emotional and mental wellbeing. Patients access a ‘speed dial’ button leading directly to a trustee, a healthcare or allied professional, or another resource appropriate to their immediate need, all linked in an interconnected network of multidisciplinary support. We, the patients, wish to draw attention to an unmet need for cardiovascular patients. While immense efforts and advancements have been made in cardiovascular medicine, the psychosocial aspect continues to be underrepresented in cardiovascular patient care and long-term follow-up. For many of us, there are significant potential gains in terms of QoL from offering long-term support with everyday situations, with concomitant gains for family and society through having thriving patients.7 Consequently, we suggest that all stakeholders in cardiovascular care, especially policy-makers, consider the implementation of patient-centred, long-term support—a ‘lifeline’—which provides services tailored to these everyday challenges. We believe that this could forestall and minimize the impact of recurring KRC iterations, while increasing the likelihood of reintegration. Within the ESC Patient Forum, few patients report having a form of lifeline in place while all forum patients consider it an essential element of future patient care. In an ideal world, CVD patients would have access to an integrated support system, easily accessible, interconnected, and tailored to the patient’s situation. We envision a multidisciplinary network of support, easily accessible to the patient, addressing difficulties experienced by the patient as a direct or indirect result of CVD. The composition of the network is tailored to the needs of the patient at any given time—a dynamic entity that evolves as the patient evolves. The network acts and communicates in a manner appropriate to the patient while actively communicating between all parts of the network with the patient at the centre. Figure 1, in combination with Table 1, provides a graphical representation of how we envision such a support system. Example composition of a long-term support system for cardiovascular patients aCV: cardiovascular. bGP: general practitioner. Cardiovascular disease is a lifelong illness, impacting almost all facets of patients’ lives. While often more physically manageable than terminal illnesses, individuals confronted with a cardiovascular diagnosis or event often feel distraught, insecure, and lost. These feelings may not always be in the foreground, or always present, but many patients experience episodes of emotional and mental unrest, which can often be triggered by situations and events not directly related to their cardiovascular function. The purpose of this article is to create awareness that (i) many CVD patients suffer episodes of mental distress1,2,4 and (ii) these patients need a long-term comprehensive support system, focused on multiple aspects of life in the context of CVD. We therefore advocate for the implementation of patient-centred, multidisciplinary, long-term support systems in the form of an interconnect network of professional and personal lifelines, made available to all CVD patients. We seek the backing of cardiologists and allied professionals in advocating for long-term support for patients and urge them to influence policy-makers by highlighting the financial and societal consequences of mental instability, especially when compared with the benefits to be had from implementing long-term support. With the support and help of the patient members on the Emotional Wellbeing Workstream of the European Society of Cardiology Patient Forum: Pisana Ferrari, Gergely Meszaros, Anne Kathrine Skibelund, and Anargyros Vasilakis, as well as the aid and guidance of the European Society of Cardiology staff on the Emotional Wellbeing Workstream: Inga Drossart and Prof. Lis Neubeck. We also thank Michele Grimson for helping with the design of the figure. R.M. reports payment for expert testimony from Cepton Strategies, France (payment was declined and went directly to the British charity Cardiomyopathy UK); travel grants from the European Society of Cardiology (ESC), More-EUROPA (Horizon funded, HORIZON-HLTH-2022-TOOL-11-02), and Digital Health for Heart Health: Research Priorities, a study into Digital Devices for CVD; and stock option. M.V.H. reports travel grants from the European Society of Cardiology (ESC). S.S.P. states that she has nothing to declare related to this manuscript.