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.

The Role of Congenital Heart Disease Patient Organizations in Advocacy, Resources, and Support Across the Lifespan.

Congenital heart disease patient organizations, comprising experts with lived experience, and their families and supporters, have become an essential voice for patient advocacy, resources, and support. Thanks largely to the Internet, these organizations are growing in number worldwide. Their common voice can be used to influence research, be the catalyst for advocacy efforts for new programmes and supports, and connect patients and providers in endeavours beyond the clinical setting. The result has become more active engagement with how policy decisions, research directions, and laws are decided that will shape patients' lives. From advocating for much-needed mental health support, policies to combat discrimination and the lack of access to support services, and partnerships with clinicians and others to develop educational resources and tools, congenital heart disease patient organizations are having a considerable impact on patient lives and ultimately patient outcomes.

Les organisations formées de patients atteints d'une cardiopathie congénitale (CC), qui sont de par leur vécu des experts en la matière, de membres de leur famille et de personnes qui les soutiennent, jouent un rôle crucial pour défendre les intérêts des patients et leur offrir des ressources et du soutien. Dans une large mesure grâce à l'Internet, le nombre de ces organisations est en croissance partout au monde. La mise en commun de leur voix peut influencer la recherche, servir de catalyseur aux initiatives en faveur de nouveaux programmes et de nouvelles formes de soutien, et contribuer à établir des liens entre les patients et les cliniciens au-delà du contexte clinique. La prise de décisions concernant les politiques, les orientations de recherche et les lois peut par conséquent bénéficier d'une participation plus active des patients, qui sont les premiers concernés. Ces organisations exercent une grande influence sur la vie des patients et, en fin de compte, sur leurs résultats cliniques, notamment grâce à tous les efforts qu'ils consacrent à la revendication d'un soutien en santé mentale, qui fait grandement défaut, de politiques de lutte contre la discrimination et le manque d'accès aux services de soutien ainsi que de partenariats avec des cliniciens et d'autres alliés dans le but de concevoir des ressources et des outils éducatifs.