Bistra Zheleva

Background: Congenital heart diseases (CHD) are the most common birth defect. Previous studies found sex disparities in outcomes after cardiac surgery and in access to treatment, but little data is available for low- and middle-income countries (LMIC). Methods: Data on CHD surgical admissions in children <18 years of age from 70 sites in 25 LMIC for cases between 2011 and 2020 from the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC) were analyzed to explore whether risk-adjusted in-hospital mortality and major infections differed by sex overall and for six common CHD surgeries. The difference between the percentage of males and females operated on for these CHDs was compared between the IQIC and in the United States (KID 2012). Findings: Of 108,439 surgical admissions, 54.4% (59,021/108,439) were males. After adjusting for case mix, no statistically significant differences in odds ratios for mortality or infection by sex were found, although females had a lower risk of death in lower complexity and higher risk of infection in higher complexity surgeries. Six lesions analysis revealed higher odds of mortality in females for ventricular septal defect repair and higher risk of major infection for coarctation repair and the arterial switch operation compared with males. For 5 of the 6 lesions, fewer females underwent surgery in IQIC compared with the United States. Interpretation: Our findings suggest that female children in LMIC have unequal access to CHD surgery compared with males with few postoperative differences in mortality or infection. Cultural and socio-economic factors such as access to timely diagnosis may be contributory.

Congenital heart disease (CHD) is the most common congenital anomaly and remains an under-recognised contributor to the global burden of cardiovascular disease. Once regarded as a paediatric condition, its burden now extends across the life course, as growing numbers of patients survive into adulthood and require lifelong, specialised care. Here we examine the global burden of CHD and propose actionable strategies. Data from the Global Burden of Disease (GBD) study, supplemented by peer-reviewed literature, global reports, and expert input, were used. We examined trends in CHD incidence, prevalence, mortality, and disability-adjusted life years (DALYs), from 1990 to 2023. In 2023, an estimated 2.3 million children were born with CHD, and 16 million people were living with the condition worldwide, up from 11.8 million in 1990, with the largest increase in lower-middle-income regions. CHD has remained the leading cause of neonatal and infant mortality among non-communicable diseases across all regions since 1990. Age-standardised mortality reached 4.7 deaths per 100,000 people globally in 2023, remaining four times higher in low-income (5.7) than in high-income (1.4) regions. Profound inequities persist across the accessibility, capacity, quality, and affordability of care, as high-income countries have 140–180 times as many cardiac surgeons as low-income countries. Coordinated initiatives such as Kerala’s Hridyam programme have shown that meaningful gains are achievable even in resource-limited settings. Persistent care disparities are driven less by an absence of clinical knowledge than by unequal access to timely diagnosis, treatment, and lifelong follow-up. Addressing the global CHD crisis will require coordinated efforts from policymakers, healthcare systems, and global health organisations, supported by the proposed 2027 World Health Assembly resolution on childhood-onset heart disease.

Quality improvement (QI) in congenital heart surgery depends mainly on the availability of reliable, organized, and usable data. While high-income countries benefit from mature national registries and well-established benchmarking systems, low- and middle-income countries (LMICs), which carry the largest global burden of congenital heart disease, continue to face significant challenges in data collection. This narrative review examines the current evolving data landscape for congenital heart surgery in LMICs, explores the relationship between existence of data systems and QI, identifies persistent barriers to data collection, and proposes context-appropriate strategies for sustainable progress. Evidence from published outcome studies, national and regional registry reports, and some major international databases demonstrates encouraging growth in progressive maturation of data systems across LMICs. Importantly, successful models illustrate that even incremental data collection, when focused on high-impact indicators such as mortality, major morbidity, and hospital length of stay, can generate meaningful improvements when linked with local clinical leadership, simple audit mechanisms, and collaborative learning networks. Although comprehensive, high-fidelity data collection may be unrealistic in many resource-constrained environments, the pursuit of perfection should not impede progress. Stepwise, local data strategies, supported by international collaboration, capacity building, and context-sensitive implementation, offer a realistic and transformative pathway toward safer, more equitable congenital cardiac care in LMICs.

Background: Survival from Congenital Heart Disease (CHD) strongly depends on local health system capacity, in addition to lesion complexity, yet the extent to which CHD is recognised within national health policy frameworks remains poorly understood. We, therefore, aimed to assess the presence, framing, and level of policy commitment to CHD within national health priority documents across countries of different income levels. Methodology: A cross-sectional policy content analysis was conducted using publicly available national health strategies, child health plans, non-communicable disease strategies, and universal health coverage roadmaps. Documents were sourced from government websites and international repositories. References to CHD were classified as explicit, implicit, or absent, and policy commitment was categorised as none or actionable. Analysis was stratified by the World Bank income group. Findings: Among 193 UN countries and two observer states, CHD was absent from national policy documents in 109 countries, implicitly mentioned in 48 countries, and explicitly referenced in 38 countries. Overall, 44.1% of countries mentioned CHD in any form within their national health policies. Actionable commitments were identified in 18.5% of countries; among those that referenced CHD, 41.9% progressed to actionable measures. Explicit reference to CHD was strongly associated with actionable commitment (78.9%) compared with implicit framing (12.5%). Recognition increased with income, from 18.5% in LICs to 58.5% in HICs, yet actionable commitment did not follow a clear income gradient. Interpretation: CHD is inconsistently represented within national health priority frameworks despite its substantial global burden. Where explicitly recognised, CHD is more likely to be accompanied by structured commitments. Strengthening policy positioning of CHD within national strategies represents a critical step toward coordinated congenital cardiac care systems.

Background: There is geographic disparity in the provision of Pediatric and Congenital Heart Disease (PCHD) services; Africa accounts for only 1% of global cardiothoracic surgical capacity. Methods: We conducted a survey of PCHD services in Africa, to investigate institution and national-level resources for pediatric cardiology and cardiothoracic surgery. Results were compared with international guidelines for PCHD services and institutions were ranked by a composite score for low- and middle-income PCHD services. Results: There were 124 respondents from 96 institutions in 45 countries. Eighteen (40%) countries provided a full PCHD service including interventional cardiology and cardiopulmonary bypass (CPB) cardiac surgery. Ten countries (22%) provided cardiac surgery services but no interventional cardiology service, 4 of which did not have CPB facilities. One provided interventional cardiology services but no cardiac surgery service. Ten countries (22%) had no PCHD service. There were 0.04 (interquartile range [IQR]: 0.00-0.13) pediatric cardiothoracic surgeons and 0.17 (IQR: 0.02-0.35) pediatric cardiologists per million population. No institution met all criteria for level 5 PCHD national referral centers, and 8/87 (9.2%) met the criteria for level 4 regional referral centers. Thirteen (29%) countries report both pediatric cardiology and cardiothoracic surgery fellowship training programs. Conclusions: Only 18 (40%) countries provided full PCHD services. The number of pediatric cardiologists and cardiothoracic surgeons is below international recommendations. Only Libya and Mauritius have the recommended 2 pediatric cardiologists per million population, and no country meets the recommended 1.25 cardiothoracic surgeons per million. There is a significant shortage of fellowship training programs which must be addressed if PCHD capacity is to be increased.

Background: There is geographic disparity in the provision of Pediatric and Congenital Heart Disease (PCHD) services; Africa accounts for only 1% of global cardiothoracic surgical capacity. Methods: We conducted a survey of PCHD services in Africa, to investigate institution and national-level resources for pediatric cardiology and cardiothoracic surgery. Results were compared with international guidelines for PCHD services and institutions were ranked by a composite score for low- and middle-income PCHD services. Results: There were 124 respondents from 96 institutions in 45 countries. Eighteen (40%) countries provided a full PCHD service including interventional cardiology and cardiopulmonary bypass (CPB) cardiac surgery. Ten countries (22%) provided cardiac surgery services but no interventional cardiology service, 4 of which did not have CPB facilities. One provided interventional cardiology services but no cardiac surgery service. Ten countries (22%) had no PCHD service. There were 0.04 (interquartile range [IQR]: 0.00-0.13) pediatric cardiothoracic surgeons and 0.17 (IQR: 0.02-0.35) pediatric cardiologists per million population. No institution met all criteria for level 5 PCHD national referral centers, and 8/87 (9.2%) met the criteria for level 4 regional referral centers. Thirteen (29%) countries report both pediatric cardiology and cardiothoracic surgery fellowship training programs. Conclusions: Only 18 (40%) countries provided full PCHD services. The number of pediatric cardiologists and cardiothoracic surgeons is below international recommendations. Only Libya and Mauritius have the recommended 2 pediatric cardiologists per million population, and no country meets the recommended 1.25 cardiothoracic surgeons per million. There is a significant shortage of fellowship training programs which must be addressed if PCHD capacity is to be increased.

Congenital heart disease is a leading cause of preventable death in children, with a disproportionate impact on low‐ and middle‐income countries. Despite progress in treating congenital heart disease globally, significant challenges remain in accessing specialized cardiovascular care, particularly cardiac surgery, in low‐ and middle‐income countries. This review examines current models of assistance and proposes a novel global training program to address these inequities. Key challenges identified include building program infrastructure, training health care providers, ensuring financial sustainability, and promoting local engagement. The proposed program, structured under a new international organization, will leverage emerging technologies to deliver accessible and rigorously assessed training in pediatric and congenital cardiac care. By collaborating with local experts and global partners, the program will promote access to education for various health care personnel involved in congenital heart disease care, establish credentialing standards, and foster global collaboration. This unified, scalable approach aims to bridge the health equity gap and accelerate progress toward comprehensive and sustainable cardiac care programs worldwide.

Global inequities in pediatric and congenital heart disease care remain a significant challenge, disproportionately affecting children in low- and middle-income countries (LMICs). This review examines the interplay between economic factors and inertia in perpetuating these inequities and causes and recommends solutions and successful examples such as strategic investments in healthcare infrastructure, workforce training, and policy reform. Economic limitations intersect with social, political, and cultural dynamics to impact access to timely diagnosis, advanced interventions, and long-term follow-up care. Addressing global inequities in pediatric and congenital heart disease care requires a multifaceted population health approach, with advocacy for policy and national planning serving as a cornerstone for meaningful change. Together, these actions pave the way for a future where every child has an equal chance to lead a healthy, fulfilling life, free from the constraints of inequitable healthcare access. Bridging these gaps is not only a moral imperative but also essential to achieving equitable health outcomes for children worldwide.

Over 90% of the world’s children with congenital heart disease (CHD) are born in the resources poor settings of low- to middle-income countries (LMICs). The shortfall in human and material resources and dysfunctional health systems leads to poor quality of care (QoC) which contributes substantially to suboptimal outcomes of patients with CHD in LMICs. Notwithstanding these challenges, it is possible to develop a quality improvement (QI) framework that can have a significant impact on outcomes and prevent a number of deaths. In this review, we examine the common barriers to implementing effective QI processes in LMICs. Using examples of successful QI initiatives in LMIC, we propose a broad framework that focuses on simple, yet effective measures involving cohesive efforts of all key participants guided and nurtured by a leadership that strongly values QoC.