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 - Funding Information:
This work was supported by the Research Fund–KU Leuven (Leuven, Belgium) Grant OT/11/033; Swedish Heart-Lung Foundation Grant 20130607; University of Gothenburg Centre for Person-centred Care; and Cardiac Children's Foundation (Taiwan) Grant CCF2013_02.The psychological impact and adaptive response to an ICD is complex and multifactorial. Psychological distress and concerns regarding ICDs have been reported in approximately 20% of the general population with ICDs.18 Our observation that ICD recipients with CHD perceive their illness as more threatening is, therefore, compatible with these findings. This perception might not be unrealistic given that patients who require an ICD may objectively have a more threatening condition than those who do not. Determinants of a more threatening illness perception, which remain speculative, may include factors such as fear of sudden death and one's ability to cope, social support, intensity of medical follow-up, apprehension about possible shocks, and concerns surrounding the ICD, including complications, malfunction, and costs. The nonsignificant trend toward a higher degree of perceived physical limitations in ICD recipients noted in the current study could potentially contribute to a less favorable illness perception. Whether targeted psychoeducational interventions19 could improve psychological outcomes after ICD implantation in adults with CHD remains to be determined.
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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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 -