Enhancing Quality of Congenital Heart Care Within Resource-Limited Settings.

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.

Understanding the impact of clinical and leadership development activities for pediatric cardiac nurses in India.

The major challenges for pediatric cardiac nursing in India include inadequacies in their levels of education and lack of recognition of their vital role in the health-care system. The aim of this study was to understand the impact of the leadership educational initiatives on pediatric cardiac nursing taken by Children's HeartLink and the Pediatric Cardiac Society of India. Semi-structured interviews were conducted with eight pediatric cardiac nurse leaders from different Indian hospitals. A review of interviews from a previous study and an extensive literature review provided further foundational data on two major themes. The first theme on nursing education focused on nursing curriculum update, continuing education, and leadership development. The second theme focused on improving the value of nursing in public perception, value in hospitals, and their career promotions. The study identified the potential targets for improvement and provided a nursing career development ladder applicable to India.

Advocacy at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery.

The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) will be held in Washington DC, USA, from Saturday, 26 August, 2023 to Friday, 1 September, 2023, inclusive. The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery will be the largest and most comprehensive scientific meeting dedicated to paediatric and congenital cardiac care ever held. At the time of the writing of this manuscript, The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery has 5,037 registered attendees (and rising) from 117 countries, a truly diverse and international faculty of over 925 individuals from 89 countries, over 2,000 individual abstracts and poster presenters from 101 countries, and a Best Abstract Competition featuring 153 oral abstracts from 34 countries. For information about the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery, please visit the following website: [www.WCPCCS2023.org]. The purpose of this manuscript is to review the activities related to global health and advocacy that will occur at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery.Acknowledging the need for urgent change, we wanted to take the opportunity to bring a common voice to the global community and issue the Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases. A copy of this Washington DC WCPCCS Call to Action is provided in the Appendix of this manuscript. This Washington DC WCPCCS Call to Action is an initiative aimed at increasing awareness of the global burden, promoting the development of sustainable care systems, and improving access to high quality and equitable healthcare for children with heart disease as well as adults with congenital heart disease worldwide.

Recommendations for developing effective and safe paediatric and congenital heart disease services in low-income and middle-income countries: a public health framework.

The global burden of paediatric and congenital heart disease (PCHD) is substantial. We propose a novel public health framework with recommendations for developing effective and safe PCHD services in low-income and middle-income countries (LMICs). This framework was created by the Global Initiative for Children's Surgery Cardiac Surgery working group in collaboration with a group of international rexperts in providing paediatric and congenital cardiac care to patients with CHD and rheumatic heart disease (RHD) in LMICs. Effective and safe PCHD care is inaccessible to many, and there is no consensus on the best approaches to provide meaningful access in resource-limited settings, where it is often needed the most. Considering the high inequity in access to care for CHD and RHD, we aimed to create an actionable framework for health practitioners, policy makers and patients that supports treatment and prevention. It was formulated based on rigorous evaluation of available guidelines and standards of care and builds on a consensus process about the competencies needed at each step of the care continuum. We recommend a tier-based framework for PCHD care integrated within existing health systems. Each level of care is expected to meet minimum benchmarks and ensure high-quality and family centred care. We propose that cardiac surgery capabilities should only be developed at the more advanced levels on hospitals that have an established foundation of cardiology and cardiac surgery services, including screening, diagnostics, inpatient and outpatient care, postoperative care and cardiac catheterisation. This approach requires a quality control system and close collaboration between the different levels of care to facilitate the journey and care of every child with heart disease. This effort was designed to guide readers and leaders in taking action, strengthening capacity, evaluating impact, advancing policy and engaging in partnerships to guide facilities providing PCHD care in LMICs.

Effects of COVID-19 on paediatric cardiac centres in low-income and middle-income countries: a mixed-methods study.

OBJECTIVES: The aim of this study was to understand the effects of the COVID-19 pandemic on paediatric cardiac services in critical access centres in low-income and middle-income countries. DESIGN: A mixed-methods approach was used. SETTING: Critical access sites that participate in the International Quality Improvement Collaborative (IQIC) for congenital heart disease (CHD) were identified. PARTICIPANTS: Eight IQIC sites in low-income and middle-income countries agreed to participate. OUTCOME MEASURES: Differences in volume and casemix before and during the pandemic were identified, and semistructured interviews were conducted with programme representatives and analysed by two individuals using NVivo software. The qualitative component of this study contributed to a better understanding of the centres' experiences and to identify themes that were common across centres. RESULTS: In aggregate, among the seven critical access sites that reported data in both 2019 and 2020, there was a 20% reduction in case volume, though the reduction varied among programmes. Qualitative analysis identified a universal impact for all programmes related to Access to Care/Clinical Services, Financial Stability and Professional/Personal Issues for healthcare providers. CONCLUSIONS: Our study identified and quantified a significant impact of the COVID-19 pandemic on critical access to CHD surgery in low-income and middle-income countries, as well as a significant adverse impact on both the skilled workforce needed to treat CHD and on the institutions in which care is delivered. These findings suggest that the COVID-19 pandemic has been a major threat to access to care for children with CHD in resource-constrained environments and that this effect may be long-lasting beyond the global emergency. Efforts are needed to preserve vulnerable CHD programmes even during unprecedented pandemic situations.

Prenatal diagnosis lowers neonatal cardiac care costs in resource-limited settings.

BACKGROUND: Prenatal diagnosis of critical CHDs and planned peripartum care is an emerging concept in resource-limited settings. OBJECTIVE: To report the impact of prenatal diagnosis and planned peripartum care on costs of neonatal cardiac care in a resource-limited setting. METHODS: Prospective study (October 2019 to October 2020). Consecutive neonates undergoing surgery or catheter-based interventions included. Patients were divided into prenatal (prenatal diagnosis) and post-natal (diagnosis after birth) groups. Costs of cardiac care (total, direct, and indirect) and health expenses to income ratio were compared between study groups; factors impacting costs were analysed. RESULTS: A total of 105 neonates were included, including 33 in prenatal group. Seventy-seven neonates (73.3%) underwent surgical procedures while the rest needed catheter-based interventions. Total costs were 16.2% lower in the prenatal group (p = 0.008). Direct costs were significantly lower in the prenatal group (18%; p = 0.02), especially in neonates undergoing surgery (20.4% lower; p = 0.001). Health expenses to income ratio was also significantly lower in the prenatal group (2.04 (1.03-2.66) versus post-natal:2.58 (1.55-5.63), p = 0.01);, particularly in patients undergoing surgery (prenatal: 1.58 (1.03-2.66) vs. post-natal: 2.99 (1.91-6.02); p = 0.002). Prenatal diagnosis emerged as the only modifiable factor impacting costs on multivariate analysis. CONCLUSION: Prenatal diagnosis and planned peripartum care of critical CHD is feasible in resource-limited settings and is associated with significantly lower costs of neonatal cardiac care. The dual benefit of improved clinical outcomes and lower costs of cardiac care should encourage policymakers in resource-limited settings towards developing more prenatal cardiac services.

A Population Health Approach to Address the Burden of Congenital Heart Disease in Kerala, India.

Background: Congenital heart disease (CHD) has emerged as a leading contributor to infant mortality in many low-and middle-income countries (LMICs). We report early results of a population health program for CHD, implemented in the state of Kerala, India. Objective: Report on early results of a population-based program implementation in a LMIC to reduce mortality from CHD. Methods: We retrospectively analyzed the results of an innovative population-based program to address CHD. We devised, implemented and evaluated measures in the care continuum to address deficiencies in CHD care in Kerala, India, through structured capacity building initiatives that enabled early detection, prompt stabilization and expedited referral to a tertiary center. A comprehensive web-based application enabled real-time case registration, prioritization of treatment referrals, and tracking every child registered with CHD. Advanced pediatric heart care was delivered through a public-private partnership. Results: Early identification, referral, and treatment of infants with CHD were improved. The web-based application, 'Hridyam,' registered 502 cases in 2017 (Aug-Dec), 2190 in 2018 and 3259 in 2019; infants < 1 year of age constituted 56, 62 and 63% in these years, respectively. The number of heart operations managed through Hridyam rose from 208 to 624 and 1227 in the same years, with overall 30-day mortality of 2.4%. Overall- and CHD-related infant mortality in Kerala fell by 21.1% and 41.0%, respectively, over the same interval. Unmet challenges include lack of universal catchment and a 5% preoperative mortality rate. Conclusion: We demonstrate successful implementation of a population-based and real-time approach to reduce CHD mortality. We speculate that Hridyam has contributed to the observed decline in Kerala's IMR from 12 to 7 between 2016 and 2019. This model has potential applications for other conditions, and in other jurisdictions, especially LMICs considering building CHD capacity.

Infrastructure Availability for the Care of Congenital Heart Disease Patients and Its Influence on Case Volume, Complexity and Access Among Healthcare Institutions in 17 Middle-Income Countries.

The care for patients with congenital heart disease (CHD) is multi-disciplinary and resource intensive. There is limited information about the infrastructure available among programs that care for CHD patients in low and middle-income countries (LMIC). A survey covering the entire care-pathway for CHD, from initial assessment to inpatient care and outpatient follow-up, was administered to institutions participating in the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC). Surgical case complexity-mix was collected from the IQIC registry and estimated surgical capacity requirement was based on population data. The statistical association of selected infrastructure with case volume, case-complexity and percentage of estimated case-burden actually treated, was analyzed. Thirty-seven healthcare institutions in seventeen countries with median annual surgical volume of 361 (41-3503) operations completed the survey. There was a median of two (1-16) operating room/s (OR), nine (2-80) intensive care unit (ICU) beds, three (1-20) cardiac surgeons, five (3-30) OR nurses, four (2-35) anesthesiologists, four (1-25) perfusionists, 28 (5-194) ICU nurses, six (0-30) cardiologists and three (1-15) interventional cardiologists. Higher surgical volume was associated with higher OR availability (p = 0.007), number of surgeons (p = 0.002), OR nurses (0.008), anesthesiologists (p = 0.04), perfusionists (p = 0.001), ICU nurses (p < 0.001), years of experience of the most senior surgeon (p = 0.03) or cardiologist (p = 0.05), and ICU bed capacity (p = 0.001). Location in an upper-middle income country (P = 0.04), OR availability (p = 0.02), and number of cardiologists (p = 0.004) were associated with performing a higher percentage of complex cases. This study demonstrates an overall deficit in the infrastructure available for the care of CHD patients among the participating institutions. While there is considerable variation across institutions surveyed, deficits in infrastructure that requires long-term investment like operating rooms, intensive care capacity, and availability of trained staff, are associated with reduced surgical capacity and access to CHD care.

Current Status of Training and Certification for Congenital Heart Surgery Around the World: Proceedings of the Meetings of the Global Council on Education for Congenital Heart Surgery of the World Society for Pediatric and Congenital Heart Surgery.

The optimal training of the highly specialized congenital heart surgeon is a long and complex process, which is a significant challenge in most parts of the world. The World Society for Pediatric and Congenital Heart Surgery (WSPCHS) has established the Global Council on Education for Congenital Heart Surgery as a nonprofit organization with the goal of assessing current training and certification and ultimately establishing standardized criteria for the training, evaluation, and certification of congenital heart surgeons around the world. The Global Council and the WSPCHS have reviewed the present status of training and certification for congenital cardiac surgery around the world. There is currently lack of consensus and standardized criteria for training in congenital heart surgery, with significant disparity between continents and countries. This represents significant obstacles to international job mobility of competent congenital heart surgeons and to the efforts to improve the quality of care for patients with Congenital Heart Disease worldwide. The purpose of this article is to summarize and document the present state of training and certification in congenital heart surgery around the world.

Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group.

AIMS: Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients. METHODS AND RESULTS: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: (i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form. CONCLUSION: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.

Children at the Heart of Global Cardiac Surgery: An Advocacy Stakeholder Analysis.

One in a hundred babies, or 1.3 million per year around the world, are born with congenital heart defects (CHD), of which over 70% will require medical or surgical treatment within their first year of life. In low- and middle-income countries, the majority does not receive the treatment they need or receive suboptimal care. Despite a higher pediatric cardiac surgical disease burden, low-income countries only have 0.07 pediatric cardiac surgeons per million pediatric population, compared to 9.51 per million in high-income countries. Here, we perform a stakeholder analysis of existing advocacy bodies within the field of pediatric global cardiac surgery and identify gaps and opportunities in advocating for cardiac care for children with CHD. We propose a framework to optimize civil society messaging in order to more effectively advocate domestically and internationally to hold national and international policy makers accountable for existing gaps and disparities in CHD care around the world.

Considerations for Newborn Screening for Critical Congenital Heart Disease in Low- and Middle-Income Countries.

We propose several considerations for implementation of critical congenital heart disease (CCHD) screening for low- and middle-income countries to assess health system readiness for countries that may not have all the downstream capacity needed for treatment of CCHD. The recommendations include: (1) assessment of secondary and tertiary level CHD health services, (2) assessment of birth delivery center processes and staff training needs, (3) data collection on implementation and quality surgical outcomes, (4) budgetary consideration, and (5) consideration of the CCHD screening service as part of the overall patient care continuum.

Early Impact of the COVID-19 Pandemic on Congenital Heart Surgery Programs Across the World: Assessment by a Global Multi-Societal Consortium.

The coronavirus disease 2019 (COVID-19) pandemic currently gripping the globe is impacting the entire health care system with rapidly escalating morbidities and mortality. Although the infectious risk to the pediatric population appears low, the effects on children with congenital heart disease (CHD) remain poorly understood. The closure of congenital heart surgery programs worldwide to address the growing number of infected individuals could have an unintended impact on future health for COVID-19-negative patients with CHD. Pediatric and congenital heart surgeons, given their small numbers and close relationships, are uniquely positioned to collectively assess the impact of the pandemic on surgical practice and care of children with CHD. We present the results of an international survey sent to pediatric and congenital heart surgeons characterizing the early impact of COVID-19 on the care of patients with CHD.

Heart University: a new online educational forum in paediatric and adult congenital cardiac care. The future of virtual learning in a post-pandemic world?

Online learning has become an increasingly expected and popular component for education of the modern-day adult learner, including the medical provider. In light of the recent coronavirus pandemic, there has never been more urgency to establish opportunities for supplemental online learning. Heart University aims to be "the go-to online resource" for e-learning in CHD and paediatric-acquired heart disease. It is a carefully curated open access library of paedagogical material for all providers of care to children and adults with CHD or children with acquired heart disease, whether a trainee or a practising provider. In this manuscript, we review the aims, development, current offerings and standing, and future goals of Heart University.