Abstract
Background:In many developing countries, rheumatic heart disease (RHD) is diagnosed at an advanced stage and requires surgery for patient survival. However, access to cardiac surgery in this context is limited and often provided through partnerships, requiring centralized patient data systems for monitoring and follow-up.Objectives:This study used data from a national postoperative RHD registry to analyze clinical outcomes of Rwandan patients who received surgery between 2006 and 2017.Methods:The RHD registry was created in 2017 using data compiled from Rwanda Ministry of Health and RHD surgery partners. We extracted pre- and post-operative data on patients who were alive and in care. We excluded patients who died or were lost to follow-up, as their data was not collected in the registry. We evaluated the association between demographic, surgical, and follow-up characteristics and most recent patient symptoms, categorized by New York Heart Association (NYHA) class.Findings:Among the 191 patients eligible for inclusion in this study, 107(56.0%) were female, 110(57.6%) were adults at the time of surgery (>15 years), and 128(67.4%) had surgery in Rwanda. Most patients (n = 166, 86.9%) were on penicillin prophylaxis. Of the patients with mechanical valves, 47(29.9%) had therapeutic International Normalized Ratio values. 90% of patients were asymptomatic (NYHA I) at the time of most recent visit. NYHA class was not significantly associated with any of the considered variables. The median length of follow-up for patients was four years (IQR: 2, 5 years).Conclusion:This study shows both the feasibility and challenges of creating a RHD registry 11 years after the national initiation of RHD surgeries. Most patients captured in the registry are asymptomatic; however, collecting details on patients who had died or were lost to follow-up has proven difficult. Implementing strategies to maintain a complete and up-to-date registry will facilitate follow-up for pre- and postoperative patients.
Highlights
In many developing countries, rheumatic heart disease (RHD) is diagnosed at an advanced stage and requires surgery for patient survival
This paper presents the early development of this postoperative RHD registry in Rwanda and includes a description of Rwandan RHD patients, both adults and children, who received surgery between 2006 and 2017 either through specialist visiting teams or through out-of-country referrals
RHD surgery and follow-up in Rwanda In Rwanda, RHD heart surgery candidates are referred from district hospitals to cardiologists at the public teaching hospitals for preoperative screening
Summary
Rheumatic heart disease (RHD) is diagnosed at an advanced stage and requires surgery for patient survival. Objectives: This study used data from a national postoperative RHD registry to analyze clinical outcomes of Rwandan patients who received surgery between 2006 and 2017. Many LICs are unable to provide cardiac surgery as part of their national health system [4] Patients often receive their RHD diagnosis at an advanced stage, a challenge for a disease that requires significant interventions such as open heart surgery [5]. RHD patients require lifelong follow-up to optimize their clinical outcomes. This follow-up includes clinical and echocardiographic review along with regular secondary penicillin prophylaxis. Those who receive a mechanical valve require anticoagulation treatment and regular International Normalized Ratio (INR) monitoring [6]
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