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

Abstract

The globalburdenof 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.

Barriers to Accessing Congenital Heart Surgery in Low- and Middle-Income Countries: A Systematic Review

“…In HICs, more than 95% of children born with a CHD reach adulthood, resulting in the prevalence of ACHD surpassing pediatric CHD. 47 As CHD care remains insufficient across LMICs and premature mortality high, ACHD needs are poorly described and ACHD care is particularly lacking. It is estimated that there are approximately 150 ACHD centers in the United States, 17 in Canada, and 365 in Europe, whereas LMICs have only a fraction of those: most countries have either no ACHD center or one center catering to more than 40 million people.…”

“…In HICs, more than 95% of children born with a CHD reach adulthood, resulting in the prevalence of ACHD surpassing pediatric CHD. 47 48,49 As a result, only a minority of adults with CHD in LMICs have received surgery or interventional cardiology despite their needs. Those who do receive care are often at risk of poorer outcomes compared compared with patients in HICs due to the complexity of ACHD presentations and a general lack of specialized training in ACHD.…”

E-Health: A Game Changer in Fetal and Neonatal Cardiology?

“…In many parts of the world, pediatric cardiology services are centralized to deliver high-quality patient care by experienced physicians. This makes the patients (children) and their parents travel long distances and miss school and work days, and puts some pressure on limited travel resources [18]. E-health with telemonitoring and e-health consultations can help in minimizing these long-distance travels.…”

Challenges of Congenital Heart Surgery in Brazil: It is Time to Designate Pediatric Congenital Heart Surgery Subspecialty

“…This established the prerequisites for extracorporeal circulation and surgical technique, as well as immersion in pathophysiology, with anatomical heart models ( in vivo or derived from 3D printing), aiming at the personal growth of the future surgeon and collaborative work with the multidisciplinary team (clinical pediatric cardiologists, psychologists, physiotherapists, nurses, social workers, and others). In this way, it maximized the understanding of the impact of CHD on the individual, the family, and the society receiving care [ 13 , 16 , 17 ] .…”