Improving the heart valve disease journey of care: a new action plan for better partnerships with patients, clinicians, and policymakers

Heart valve disease—be it localized in one or more of the four valves, acquired or congenital, stenotic, or regurgitant—is prevalent across international regions, often associated with a complex trajectory, and results in mortality, increased health resource requirements, and significant deterioration in the quality of life. Heart valve disease is the most common cardiac disease following hypertension and coronary artery disease and affects nearly 3% of the general population and 13% of people over the age of 75 in high-income countries. Described as the next cardiac epidemic, prevalence is expected to double by 2040, and triple by 2060 due to the ageing of the population. There are safe, effective, and lasting treatment options for most types of heart valve disease that can relieve disease progression, significantly improve the quality of life, and reduce mortality, morbidity, and readmissions in many patients. People with heart valve disease face the additional barriers of a triple threat that impacts their journey of care: (i) low levels of disease awareness among both primary care providers and most people, (ii) inequitable access to high-quality diagnostic imaging, specialized heart teams, and timely treatment, and (iii) unequal invitation and ability to participate in making a good treatment decision that reflects peoples’ priorities and preferences. In this challenging context, heart valve disease remains under-recognised, under-diagnosed, under-treated, or treated too late across international regions. The Health Policy Partnership and the Global Heart Hub have recently joined forces to create an important report ‘Heart Valve Disease. Working together to create a better patient journey’ to advocate for effective strategies to address the many gaps in patients’ pathways.1 Combined with the 2021 updated European Society of Cardiology/European Association for Cardio-Thoracic Surgery Guidelines for the Management of Valvular Heart Disease,1 this call to action supports an evidence-based and patient-centred pathway from detection to life-long follow-up to improve patients’ journey of care.2,3,4 The raised awareness of these systemic gaps has prompted patient coalitions, clinicians, and policymakers to advocate for concrete actions to shift the culture of heart valve disease care. Still, there is a pressing need to ensure that all patients experience seamless, inclusive, timely, and high-quality care to treat heart valve disease. The momentum to achieve these goals creates opportunities for nurses, allied health professionals, and researchers to foster better partnerships with patients, multidisciplinary clinicians, and policymakers—opportunities to guide the much-needed changes in health policy, clinical care, and patient engagement to improve outcomes, experiences, and access to heart valve disease care. We can collectively propose an action plan that leverages the expertise of people with live experience at each stage of their journey, in addition to the input of specialized clinicians and engaged policymakers to shape meaningful action and help mitigate the risk of failed management of heart valve disease. The path to improved disease awareness, diagnosis, and detection can be accelerated by empowering people with heart valve disease to become community-based ambassadors who bring their experiences and stories to the forefront. For example, education and community engagement campaigns have successfully raised the awareness of acute coronary syndromes and stroke by championing the voice of patients and conveying simple messages to recognize symptoms and act. Similarly, patient-featuring and patient-informed campaigns to highlight the sometimes-confusing symptoms of heart valve disease are needed. This can be downplayed to general signs of ageing, prompt stethoscope checks with primary care providers to identify a murmur, and communication of the importance and effectiveness of timely treatment which are likely to bring valvular heart disease out of the shadows. Such initiatives may also be important to ensure seamless access to care to remove barriers to treatment. Advocacy for timely referrals to a comprehensive heart team, including specialized heart valve nurses, will ensure that all patients have access to team-based care, undergo required timely diagnostics, and are offered appropriate treatment options.5 The pursuit of an integrated care model anchored in a comprehensive valve centre can promote access to the resources, facilities, and training to provide high-quality, advanced care for people with heart valve disease. In these settings, the expert interdisciplinary team—inclusive of cardiology, cardiac surgery, nursing, cardiac imaging specialists, and other important stakeholders—is ideally positioned to efficiently manage referrals, coordinate the required assessment pathway, and leverage clinical expertise to make a consensus treatment recommendation. Shared decision-making goes beyond passive imparting of education from clinicians to patients; in contrast, it refers to an exchange of information that considers the equally important expertise of healthcare providers who share their knowledge of contemporary evidence—and of patients who are invited to communicate what matters most to them in the context of their treatment at their stage of life.6 Importantly, it is not about ‘choosing from a menu’ that may inadvertently result in poor outcomes. Rather, it is a process designed to facilitate the consideration of clinical risks and benefits, and patients’ priorities and preferences leading to the achievement of a high-quality decision. There is evidence that patients welcome their inclusion in discussions and prefer to be asked their opinion with regard to their options; the process is widely endorsed by multiple guidelines. The use of shared decision-making results in lower levels of decisional conflict and improves people’s sense of control over their illness, the engagement in their health, and their satisfaction. These positive outcomes and good intentions often remain unfulfilled as we continue to lack strong evidence to guide the effective implementation of shared decision-making across disciplines and within patient groups. The call to action of the Health Policy Partnership and the Global Heart Hub calls on all stakeholders to integrate shared decision-making in a meaningful way into our patients’ journey of care. The proposed plan for effective and achievable actions to improve heart valve disease patients’ journey of care through a strengthened partnership between patients, clinicians, and policymakers offers a road map to set priorities and achieve measurable changes. These tangible benefits will help address the anticipated impact of the growing burden of heart valve disease and ensure that, along all stops of this often-challenging journey, patients’ evolving needs remain the primary focus of care. No data with the current manuscript.

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