Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda

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 m...

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Autores principales:	Evariste Ntaganda, Emmanuel Rusingiza, Gilbert Rukundo, Loise Ng’ang’a, Bethany Hedt-Gauthier, Ziad El-Khatib, Gene F. Kwan, Ganza Gapira, Neil K. Worral, JaBaris Swain, Abel Kagame, Cadet Mutumbira, Nathan Ruhamya, Ceeya Bolman, Jessica Sewase, Gilles Ndayisiba, R.Morton Bolman III, Harold Goldberg, Joseph Mucumbitsi
Formato:	article
Lenguaje:	EN
Publicado:	Ubiquity Press 2020
Materias:	Infectious and parasitic diseases RC109-216 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/e506da1969ad43c5977294b4a7d63ec6
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spelling	oai:doaj.org-article:e506da1969ad43c5977294b4a7d63ec62021-12-02T11:15:48ZPostoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda2214-999610.5334/aogh.2719https://doaj.org/article/e506da1969ad43c5977294b4a7d63ec62020-09-01T00:00:00Zhttps://annalsofglobalhealth.org/articles/2719https://doaj.org/toc/2214-9996Background: 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.Evariste NtagandaEmmanuel RusingizaGilbert RukundoLoise Ng’ang’aBethany Hedt-GauthierZiad El-KhatibGene F. KwanGanza GapiraNeil K. WorralJaBaris SwainAbel KagameCadet MutumbiraNathan RuhamyaCeeya BolmanJessica SewaseGilles NdayisibaR.Morton Bolman IIIHarold GoldbergJoseph MucumbitsiUbiquity PressarticleInfectious and parasitic diseasesRC109-216Public aspects of medicineRA1-1270ENAnnals of Global Health, Vol 86, Iss 1 (2020)
institution	DOAJ
collection	DOAJ
language	EN
topic	Infectious and parasitic diseases RC109-216 Public aspects of medicine RA1-1270
spellingShingle	Infectious and parasitic diseases RC109-216 Public aspects of medicine RA1-1270 Evariste Ntaganda Emmanuel Rusingiza Gilbert Rukundo Loise Ng’ang’a Bethany Hedt-Gauthier Ziad El-Khatib Gene F. Kwan Ganza Gapira Neil K. Worral JaBaris Swain Abel Kagame Cadet Mutumbira Nathan Ruhamya Ceeya Bolman Jessica Sewase Gilles Ndayisiba R.Morton Bolman III Harold Goldberg Joseph Mucumbitsi Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda
description	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.
format	article
author	Evariste Ntaganda Emmanuel Rusingiza Gilbert Rukundo Loise Ng’ang’a Bethany Hedt-Gauthier Ziad El-Khatib Gene F. Kwan Ganza Gapira Neil K. Worral JaBaris Swain Abel Kagame Cadet Mutumbira Nathan Ruhamya Ceeya Bolman Jessica Sewase Gilles Ndayisiba R.Morton Bolman III Harold Goldberg Joseph Mucumbitsi
author_facet	Evariste Ntaganda Emmanuel Rusingiza Gilbert Rukundo Loise Ng’ang’a Bethany Hedt-Gauthier Ziad El-Khatib Gene F. Kwan Ganza Gapira Neil K. Worral JaBaris Swain Abel Kagame Cadet Mutumbira Nathan Ruhamya Ceeya Bolman Jessica Sewase Gilles Ndayisiba R.Morton Bolman III Harold Goldberg Joseph Mucumbitsi
author_sort	Evariste Ntaganda
title	Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda
title_short	Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda
title_full	Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda
title_fullStr	Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda
title_full_unstemmed	Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda
title_sort	postoperative rheumatic heart disease follow-up: creating a national registry and first results from rwanda
publisher	Ubiquity Press
publishDate	2020
url	https://doaj.org/article/e506da1969ad43c5977294b4a7d63ec6
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Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda

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