Period Prevalence of Rheumatic Heart Disease and the Need for a Centralized Patient Registry in American Samoa, 2016 to 2018

Background Rheumatic heart disease (RHD) is a severe, chronic complication of acute rheumatic fever, triggered by group A streptococcal pharyngitis. Centralized patient registries are recommended for RHD prevention and control, but none exists in American Samoa. Using existing RHD tracking systems, we estimated RHD period prevalence and the proportion of people with RHD documented in the electronic health record. Methods and Results RHD cases were identified from a centralized electronic health record system, which retrieved clinical encounters with RHD <i>International Classification of Diseases, Tenth Revision, Clinical Modification</i> (<i>ICD-10-CM</i>) codes, clinical problem lists referencing RHD, and antibiotic prophylaxis administration records; 3 RHD patient tracking spreadsheets; and an all-cause mortality database. RHD cases had ≥1 clinical encounter with RHD <i>ICD-10-CM</i> codes, a diagnostic echocardiogram, or RHD as a cause of death, or were included in RHD patient tracking spreadsheets. Period prevalence per 1000 population among children aged <18 years and adults aged ≥18 years from 2016 to 2018 and the proportion of people with RHD with ≥1 clinical encounter with an RHD <i>ICD-10-CM</i> code were estimated. From 2016 to 2018, RHD was documented in 327 people (57.2%: children aged <18 years). Overall RHD period prevalence was 6.3 cases per 1000 and varied by age (10.0 pediatric cases and 4.3 adult cases per 1000). Only 67% of people with RHD had ≥1 clinical encounter with an RHD <i>ICD-10-CM</i> code. Conclusions RHD remains a serious public health problem in American Samoa, and the existing electronic health record does not include all cases. A centralized patient registry could improve tracking people with RHD to ensure they receive necessary care.