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.

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.

本数据集来自以下文章：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研究联盟及国际成人先天性心脏病学会（International Society for Adult Congenital Heart Disease, ISACHD）。《植入式心律转复除颤器与成人先天性心脏病患者的患者报告结局：一项国际研究》，发表于《心律》（Heart Rhythm），2020年5月；17(5 Pt A):768-776。DOI: 10.1016/j.hrthm.2019.11.026，2019年11月30日在线发表，PMID: 31790832。

本研究摘要如下：

背景：植入式心律转复除颤器（Implantable cardioverter-defibrillators, ICDs）正日益广泛应用于不断增长的成人先天性心脏病（Adult Congenital Heart Disease, CHD）人群，以预防心源性猝死。然而，目前对其在患者报告结局（Patient-Reported Outcomes, PROs）上的影响知之甚少。

研究目的：本研究旨在评估并对比伴与不伴植入式心律转复除颤器的成人先天性心脏病患者的患者报告结局。

研究方法：本研究为一项来自5大洲15个国家的成人先天性心脏病患者国际横断面研究，采用基于倾向得分的匹配权重分析法，对患者报告结局进行评估。

研究结果：本研究共纳入3188例患者：107例植入式心律转复除颤器植入者与3081例经权重匹配的无植入式心律转复除颤器对照患者。植入式心律转复除颤器患者的平均年龄为40.1±12.4岁，其中超过95%患有中重度或复杂性先天性心脏病。植入式心律转复除颤器的植入指征中，一级预防占38.3%，二级预防占61.7%。两组患者的感知健康状态、心理困扰、连贯感及健康行为均无显著差异。然而，植入式心律转复除颤器患者对自身疾病的威胁感更强（相对百分比差异8.56；P=0.011）。与一级预防指征患者相比，二级预防指征患者的生活质量评分显著更低（线性类比量表得分：72.0±23.1 vs 79.2±13.0；P=0.047）。研究还观察到显著的地理变异性：在瑞士、阿根廷、中国台湾地区及美国，植入式心律转复除颤器患者的综合幸福感评分（整合多项患者报告结局的汇总评分）显著低于对照组患者。

研究结论：在成人先天性心脏病患者的国际队列中，植入式心律转复除颤器与患者对疾病的更强威胁感相关；二级预防指征的植入式心律转复除颤器患者的生活质量较一级预防指征患者更低。同时，患者报告结局存在显著的地理变异性。