L?vesque V.Laplante L.Shohoudi A.Apers S.Kovacs A.H.Luyckx K.Thomet C.Budts W.Enomoto J.Sluman M.A.CHUN-WEI LUJackson J.L.Cook S.C.Chidambarathanu S.Alday L.Eriksen K.Dellborg M.Berghammer M.Johansson B.Mackie A.S.Menahem S.Caruana M.Veldtman G.Soufi A.Fernandes S.M.White K.Callus E.Kutty S.Brouillette J.Casteigt B.Moons P.Khairy P.APPROACH-IS Consortiumthe International Society for Adult Congenital Heart Disease (ISACHD)2020-12-092020-12-0920201547-5271https://www.scopus.com/inward/record.uri?eid=2-s2.0-85079839192&doi=10.1016%2fj.hrthm.2019.11.026&partnerID=40&md5=fd1b5af33b8dde2f59c24d60b1f98dc7https://scholars.lib.ntu.edu.tw/handle/123456789/525236Background: Implantable cardioverter-defibrillators (ICDs) are increasingly being used to prevent sudden death in the growing population of adults with congenital heart disease (CHD). However, little is known about their impact on patient-reported outcomes (PROs). Objective: The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs. Methods: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents. Results: A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 ± 12.4 years, and >95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 ± 23.1 vs 79.2 ± 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States. Conclusion: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed. ? 2019 Heart Rhythm SocietyAdult congenital heart disease; Implantable cardioverter-defibrillator; Patient-reported outcomes; Quality of life; Sudden cardiac death[SDGs]SDG3adult; Argentina; Article; congenital heart disease; controlled study; cross-sectional study; distress syndrome; female; health behavior; health status; heart rhythm; human; major clinical study; male; patient-reported outcome; perception; primary prevention; priority journal; quality of life; secondary prevention; sense of coherence; Taiwan; United States; wellbeingjournal article10.1016/j.hrthm.2019.11.026317908322-s2.0-85079839192