The Impact of Echocardiographic Screening for Rheumatic Heart Disease on Patient Quality of Life

• Published in: The Journal of pediatrics Vol. 175; pp. 123 - 129
• Main Authors: Bradley-Hewitt, Tyler, MD, Dantin, Andrea, BS, Ploutz, Michelle, MD, Aliku, Twalib, MD, Lwabi, Peter, MD, Sable, Craig, MD, Beaton, Andrea, MD
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.08.2016
• Subjects: Adolescent; Child; Child, Preschool; Early Diagnosis; Echocardiography; Female; Follow-Up Studies; Health Status Indicators; health-related quality of life; Humans; Male; Mass Screening - methods; Patient Outcome Assessment; Pediatrics; Quality of Life; rheumatic heart disease; Rheumatic Heart Disease - diagnostic imaging; Schools; Self Report; Uganda; Pediatric Quality of Life; Pediatric Quality of Life Inventory Version 4.0; rheumatic heart disease; HRQOL; health-related quality of life; quality of life; PedsQL; PedsQL TM4.0; QOL; RHD; PedsQLTM4.0
• ISSN: 0022-3476; 1097-6833
• DOI: 10.1016/j.jpeds.2016.04.087

Objective To assess the impact of rheumatic heart disease (RHD) on child-reported health-related quality of life (HRQOL) in the context of a Ugandan school-based echocardiographic screening program. Echocardiography-based screening has emerged as a tool for the early detection of RHD, but little is known about its impact on those screened. Study design Participants included 358 children from Gulu and 28 children from Kampala Uganda. The Pediatric Quality of Life Inventory Version 4.0 was used to assess HRQOL in 4 groups of children: Gulu prescreen, Gulu postscreen, Gulu previously linked to care, and Kampala previously linked to care. Children in the pre- and postscreen groups were selected from a single school before and after screening occurred and matched by age and sex. Children previously linked to care were recruited from previous screening studies. Results When the echocardiogram was normal, there was no difference in HRQOL in the prescreen and postscreen groups. In the postscreen group, identification of latent RHD resulted in lower physical (75.3 vs 68.3, P  = .03) and emotional (71.7 vs 63.4, P  < .01) HRQOL, despite a lack of symptoms. The Kampala group had longer linkage to care (42 months vs 6 months, P  < .01) and demonstrated greater HRQOL scores compared with the Gulu-linked group (70.7 vs 77.8, P  < .01) and the combined Gulu cohort (77.8 vs 69.4, P  = .02). Conclusions Echocardiography-based screening for RHD does not diminish HRQOL in Ugandan children; rather, a diminished HRQOL score may be associated with being identified as RHD positive. Further investigation is needed to understand if longer linkage to care may ultimately normalize or improve HRQOL.