Challenges in addressing the knowledge gap on endomyocardial fibrosis through community-based studies

Abstract

Endomyocardial fibrosis (EMF) is a poverty-related disease of unknown origin that afflicts predominantly young people of certain rural areas in low-income countries and can be used to expose global disparities in cardiovascular research. Despite affecting predominantly young people and causing high morbidity and mortality, efforts to understand its mechanisms and natural history have been hampered by the incapacity to detect the early stages of the disease in endemic areas. Dietary, environmental and infectious factors seem to combine in susceptible individuals to give rise to an inflammatory process that leads to endomyocardial damage and scar formation. Lack of awareness by health professionals and low access to health care determine late diagnosis, when complications such as chronic heart failure, thromboembolism and arrhythmia are already present. Open-heart surgery to detach the endocardial fibrous tissue and repair the atrioventricular valve, remains the last resource to prolong patients' survival. Community-based research is therefore needed to understand the epidemiology of EMF, detect early disease, uncover its pathogenesis and explore new therapeutic targets. Our research has shown that echocardiographic screening using standard criteria adds sensitivity and precision to the diagnosis, particularly in asymptomatic disease, providing an opportunity for longitudinal community-based research. However, researchers face major constraints in rural settings where EMF is endemic, including socioeconomic, cultural, geographical and administrative barriers. In presenting our experience we aim to describe the challenges and discuss the lessons learned while implementing community-based research in a highly endemic area in southern Mozambique, one of the poorest countries in the world. Additionally, we discuss how recent advances in medicine-such as use of point-of-care diagnostics, heart failure biomarkers and new imaging techniques-may open new possibilities for high quality research through collaborative partnerships and regional initiatives.

Como Diagnosticar e Classificar a Fibrose Endomiocárdica em Cenários Sem Muitos Recursos?

“…No entanto, é difícil implementar estudos epidemiológicos em áreas endêmicas para validar esses critérios em estudos de seguimento. 7 Essa classificação foi aplicada para avaliar a variação geográfica na apresentação clínica da FEM na Índia. 9…”

“…Em termos clínicos, as características clínicas, o perfil biológico, os achados durante a cirurgia cardíaca aberta e as características patológicas do tecido obtido in vivo foram usados para complementar os estudos. 6,7 Dos 413 indivíduos com FEM (idade média de 15 anos no momento do diagnóstico, sem diferenças quanto ao sexo), 52 pacientes (12,1%) lembravam-se de alguma queixa antes do diagnóstico, confirmando a alta ocorrência de dissociação clínico-ecocardiográfica na FEM. 8 As características mais comuns na ecocardiografia estão indicadas na Tabela 3.…”

Non-coding RNAs: targets for Chinese herbal medicine in treating myocardial fibrosis

“…Endocardial resection can achieve the purpose of treatment by removing endocardial fibrous hyperplasia and calcification ( Eckardt et al, 2000 ). Atrioventricular valve repair/replacement can repair/replace the fibrotic valve and restore its normal function ( Mbanze et al, 2020 ). The heart transplantation can be performed when other treatments for heart problems have not worked, leading to heart failure ( Srivastava and Kittleson, 2024 ).…”

<p>Endomyocardial Fibrosis: Diagnosis and Management</p>

“…Dietary, environmental, and infectious factors seem to combine in susceptible individuals to give rise to an inflammatory process that leads to endomyocardial damage and scar formation. 1 This article was aimed at shedding light on the pathophysiology, etiology, diagnosis, and treatment of EMF with the intention of improving doctors' awareness, especially those working in the tropics, to the recognition of EMF and its management.…”

“…The combination of environmental, infectious and other unknown factors in susceptible individuals leads to endomyocardial damage and scar formation. 1 This progression from inflammation to the fibrotic stage takes different pathological shapes and indeed passes through acute myocarditis, necrotic and thrombotic phases ending eventually in the fibrotic phase. It is this fibrotic phase that transforms into the clinical EMF that reaches us in hospitals.…”