Data set from Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.

Data set from the article Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.

This is the abstract: 

Background: 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.