TY - JOUR
T1 - Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease
T2 - An international study
AU - APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)
AU - Lévesque, Valérie
AU - Laplante, Laurence
AU - Shohoudi, Azadeh
AU - Apers, Silke
AU - Kovacs, Adrienne H.
AU - Luyckx, Koen
AU - Thomet, Corina
AU - Budts, Werner
AU - Enomoto, Junko
AU - Sluman, Maayke A.
AU - Lu, Chun Wei
AU - Jackson, Jamie L.
AU - Cook, Stephen C.
AU - Chidambarathanu, Shanthi
AU - Alday, Luis
AU - Eriksen, Katrine
AU - Dellborg, Mikael
AU - Berghammer, Malin
AU - Johansson, Bengt
AU - Mackie, Andrew S.
AU - Menahem, Samuel
AU - Caruana, Maryanne
AU - Veldtman, Gruschen
AU - Soufi, Alexandra
AU - Fernandes, Susan M.
AU - White, Kamila
AU - Callus, Edward
AU - Kutty, Shelby
AU - Brouillette, Judith
AU - Casteigt, Benjamin
AU - Moons, Philip
AU - Khairy, Paul
N1 - Publisher Copyright:
© 2019 Heart Rhythm Society
PY - 2020/5
Y1 - 2020/5
N2 - 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.
AB - 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.
KW - Adult congenital heart disease
KW - Implantable cardioverter-defibrillator
KW - Patient-reported outcomes
KW - Quality of life
KW - Sudden cardiac death
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UR - http://www.scopus.com/inward/citedby.url?scp=85079839192&partnerID=8YFLogxK
U2 - 10.1016/j.hrthm.2019.11.026
DO - 10.1016/j.hrthm.2019.11.026
M3 - Article
C2 - 31790832
AN - SCOPUS:85079839192
SN - 1547-5271
VL - 17
SP - 768
EP - 776
JO - Heart Rhythm
JF - Heart Rhythm
IS - 5
ER -