PMID- 32963968 OWN - NLM STAT- MEDLINE DCOM- 20211015 LR - 20211015 IS - 2214-9996 (Electronic) IS - 2214-9996 (Linking) VI - 86 IP - 1 DP - 2020 Sep 9 TI - Postoperative Rheumatic Heart Disease Follow-Up: Creating a National Registry and First Results from Rwanda. PG - 115 LID - 10.5334/aogh.2719 [doi] LID - 115 AB - 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. CI - Copyright: (c) 2020 The Author(s). FAU - Ntaganda, Evariste AU - Ntaganda E AD - Rwanda Biomedical Center, Kigali, RW. FAU - Rusingiza, Emmanuel AU - Rusingiza E AD - University of Rwanda, College of Medicine and Health Sciences, Kigali, RW. FAU - Rukundo, Gilbert AU - Rukundo G AD - Partners In Health, Inshuti Mu Buzima, Kigali, RW. FAU - Ng'ang'a, Loise AU - Ng'ang'a L AD - Partners In Health, Inshuti Mu Buzima, Kigali, RW. FAU - Hedt-Gauthier, Bethany AU - Hedt-Gauthier B AD - Partners In Health, Inshuti Mu Buzima, Kigali, RW. AD - Department of Global Health and Social Medicine, Harvard Medical School, Boston, US. FAU - El-Khatib, Ziad AU - El-Khatib Z AD - University School of Medicine, Boston, US. AD - Karolinska Institutet, Stockholm, SE. FAU - Kwan, Gene F AU - Kwan GF AD - Department of Global Health and Social Medicine, Harvard Medical School, Boston, US. AD - University School of Medicine, Boston, US. FAU - Gapira, Ganza AU - Gapira G AD - Rwanda Military Hospital, Kigali, RW. FAU - Worrall, Neil K AU - Worrall NK AD - Healing Hearts Northwest, RW. FAU - Swain, JaBaris AU - Swain J AD - Team Heart, Inc, RW. FAU - Kagame, Abel AU - Kagame A AD - Rwanda Heart Foundation, RW. FAU - Mutumbira, Cadet AU - Mutumbira C AD - Rwanda Biomedical Center, Kigali, RW. FAU - Ruhamya, Nathan AU - Ruhamya N AD - King Faisal Hospital, Kigali, RW. FAU - Bolman, Ceeya AU - Bolman C AD - Team Heart, Inc, RW. FAU - Sewase, Jessica AU - Sewase J AD - Team Heart, Inc, RW. FAU - Ndayisaba, Gilles AU - Ndayisaba G AD - Rwanda Biomedical Center, Kigali, RW. FAU - Bolman Iii, R Morton AU - Bolman Iii RM AD - Team Heart, Inc, RW. FAU - Goldberg, Harold AU - Goldberg H AD - Healing Hearts Northwest, RW. FAU - Mucumbitsi, Joseph AU - Mucumbitsi J AD - Rwanda Heart Foundation, RW. AD - King Faisal Hospital, Kigali, RW. LA - eng GR - K23 HL140133/HL/NHLBI NIH HHS/United States PT - Journal Article PT - Research Support, Non-U.S. Gov't DEP - 20200909 PL - United States TA - Ann Glob Health JT - Annals of global health JID - 101620864 SB - IM MH - *Cardiac Surgical Procedures MH - Female MH - Humans MH - Registries MH - *Rheumatic Heart Disease/epidemiology/surgery MH - Rwanda/epidemiology PMC - PMC7485403 COIS- The authors have no competing interests to declare. EDAT- 2020/09/24 06:00 MHDA- 2021/10/16 06:00 PMCR- 2020/09/09 CRDT- 2020/09/23 06:36 PHST- 2020/09/23 06:36 [entrez] PHST- 2020/09/24 06:00 [pubmed] PHST- 2021/10/16 06:00 [medline] PHST- 2020/09/09 00:00 [pmc-release] AID - 10.5334/aogh.2719 [doi] PST - epublish SO - Ann Glob Health. 2020 Sep 9;86(1):115. doi: 10.5334/aogh.2719.