Congenital heart disease (CHD) is the most common major congenital anomaly, affecting approximately one in every 100 live births [1]. Among congenital anomalies, 66% of preventable deaths are due to CHD, and 58% of the avertable morbidity and mortality due to congenital anomalies would result from scaling congenital heart surgery services [2]. Every year, nearly 300,000 children and adults die from CHD, the majority of whom live in low-and middle-income countries (LMICs) [3]. Approximately 49% of all individuals with CHD will require surgical or interventional care at some point in their lifetime [4]; as a result of advances in access to and the delivery of such services, over 95% of children born with CHD in high-income countries now live into adulthood [3]. Here, adults have surpassed children in the number of CHD cases at a ratio of 2:1 [5]. In contrast, in LMICs, over 90% of children born with CHD do not receive the care they need, often not surviving past their childhood [6]. Indeed, even programs able to perform congenital heart surgery report limited resources, which are correlated with procedural volumes and complexity, and, thus, indirectly with long-term outcomes [7]. The 8th World Congress of Pediatric Cardiology and Cardiac Surgery, which took place in Washington DC, United States in August 2023, was themed in large part around global gaps in CHD care. Here, a call to action on ‘Addressing the Global Burden of Pediatric and Congenital Heart Diseases’ was issued, which aligned with the 2030 Global Agenda for Sustainable Development and proposed 2030 goals for CHD-oriented capacity-building, data generation, and financing worldwide [8].

This article gives an overview of the need for a health systems-oriented and lifespan perspective on CHD care. We discuss the advantages and disadvantages of vertical and horizontal approaches to CHD care and argue for a more pragmatic diagonal approach to address the historical neglect of CHD care on the global health agenda whilst ensuring sustainable and cross-cutting health systems strengthening efforts.

CHD is a lifelong condition, requiring close follow-up over a lifetime. Even when operated, there is a risk of requiring reinterventions, recurrence or progression of cardiovascular symptoms, and a risk of associated comorbidities. As a result, adult CHD has been coined a “growing epidemic” in high-income countries, reflecting both the improvements in pediatric cardiac care and the continued, multidisciplinary care needs across the lifespan [5]. However, there are common misconceptions among both patients and their families as well as healthcare professionals about the lifelong needs of patients with CHD. As a result, patients often get lost-to-follow-up when transitioning into adulthood as their care shifts from pediatric to adult cardiologists [9]. Overcoming these gaps in transition will require a coordinated effort between care teams, patients, and families to develop multifaceted and collaborative approaches to transition in care [10].

Individuals with CHD do not just suffer from physical symptoms or increased risks of health events but also more frequently report poorer mental health. Children with CHD, regardless of its severity, report higher rates of anxiety, depression, and attention deficit hyperactivity disorder compared to children without CHD [11]. Similar trends are observed in adults with ACHD, where mental health and (fear of) stigma commonly pose the biggest health issues [12]. Furthermore, childhood adversity and other social determinants of health, which are closely linked to mental health into adulthood, are associated with higher risks of cardiovascular disease and symptomatology [13]. As such, mental health services are essential as part of comprehensive CHD care across a lifetime for individuals living with CHD [14]. This is particularly important in the context of concomitant neurodevelopmental disorders or other associated conditions regardless of pediatric and congenital heart disease (PCHD) complexity [13,15].

While promising, the practical implementation of diagonal approaches is still limited by several challenges. First, a change in mindset is required to move away from vertical silos. For organizations, this will require a recognition that indirect spending on CHD care (e.g., investments in primary care) will still benefit CHD services (e.g., community-based screening and follow-up) [28]. For funders, this means a shift away from earmarking of funds, which has been the bedrock of global health financing to date. For governments, this necessitates a greater focus on health systems strengthening as opposed to “quick fixes” that may be more politically appealing to garner votes. Second, increasing care capacity must go hand in hand with improved surveillance for case detection. Many children are still born at home, in the community, or at low-resource health clinics where newborn screening for CHD is generally absent [33]. Where possible, prenatal diagnosis is preferred to reduce healthcare costs and improve outcomes [34]. Third, political prioritization is a complex process whereby certain areas of health are prioritized over others beyond mere disease burden considerations. To date, CHD care has been poorly prioritized consistent with other cardiovascular and surgical conditions [35,36]. Political buy-in is necessary to truly move the needle. Fourth, the surgical and non-surgical workforce involved with CHD care is limited, especially in LMICs [37]. Upscaling the CHD workforce will require considerable time and investments. Fifth, diagonal approaches, unlike vertical ones, are centered around financial sustainability. This requires a baseline increase in allocated funding as well as leveraging novel and innovative financing instruments to ensure fiscal sustainability. These may include but are not limited to levies placed on airline tickets (e.g., similar to UNITAID) or social impact bonds (as explored for non-communicable diseases) [38,39]. Furthermore, this requires careful and transparent costing over time to ensure adequate financial planning (e.g., health budgets) and resource allocation (e.g., based on economic evaluations) [24].

Nevertheless, several opportunities exist. The Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) unites patient-family organizations across the globe, with roughly half of these organizations based in LMICs. Accordingly, patients and families–those truly at the heart of global health–are provided a platform to voice their experiences and wishes. Policymakers, funders, and researchers are encouraged to ensure that such voices are at the table to avoid historical academic and policy ivory towers from persisting; indeed, policy change frequently happens as a result of patient advocacy. Similarly, NGOs have a key role to play in advocating for greater inclusion of CHD care in global and national health agendas [40]. Many NGOs involved with CHD care do so at their respective local and national levels, albeit commonly alone or with few partners. The even greater impact may come from the unification of voices, a lack of which has been a root cause of the low levels of political prioritization for rheumatic heart disease and global surgery [35,36]. Furthermore, innovative educational models have grown in recent years to scale open-access online learning. For example, Heart University and SURGhub are examples of widely supported e-learning platforms that can greatly support continued medical education [41,42]. These efforts should be accompanied by engaging LMIC voices in program development to meet local capacity-building needs as well as avoid historical inequities in academic deliverables. Lastly, at the health systems level, comprehensive lifespan outcomes for individuals with CHD can help inform the quality of and gaps in care [43]. These outcomes reflect both clinical and patient-reported outcomes, recognizing the need to improve hard clinical outcomes and patient-centered outcomes globally.

Conventional vertical approaches have narrow and often short-term disease-specific foci, whereas horizontal approaches address entire health systems but can come at the cost of efficiency and disease-specific progress. Lifespan and health systems-wide approaches combining the advantages of vertical and horizontal approaches are necessary to ensure appropriate and comprehensive care for people living with CHD and avert preventable morbidity, mortality, healthcare spending, and socioeconomic losses. Opportunities exist to sustainably embed CHD care within health systems through a diagonal approach, benefiting both CHD services and other parts of the health system.