Fogleman Nicholas D, Apers Silke, Moons Philip, Morrison Stacey, Wittekind Samuel G, Tomlin Martha, Gosney Kathy, Sluman Maayke A, Johansson Bengt, Enomoto Junko, Dellborg Mikael, Lu Chun-Wei, Subramanyan Raghavan, Luyckx Koen, Budts Werner, Jackson Jamie, Kovacs Adrienne, Soufi Alexandra, Eriksen Katrine, Thomet Corina, Berghammer Malin, Callus Edward, Fernandes Susan M, Caruana Maryanne, Cook Stephen C, Mackie Andrew S, White Kamila S, Khairy Paul, Kutty Shelby, Veldtman Gruschen
Cincinnati Children's Hospital Medical Center, Cincinnati, OH; Department of Psychological and Brain Sciences, University of Louisville, Louisville, KY.
KU Leuven Department of Public Health and Primary Care, Leuven, Belgium; KU Leuven Department of Development and Regeneration, Leuven, Belgium.
Am Heart J. 2017 Nov;193:55-62. doi: 10.1016/j.ahj.2017.07.019. Epub 2017 Aug 2.
Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs).
From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings.
Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD.
Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.
生活质量受损与先天性心脏病（CHD）及居住国相关；然而，很少有研究比较不同复杂程度的先天性心脏病患者在不同区域人群中的生活质量。本研究在一个大型跨国样本中，比较了接受Fontan手术的患者与房间隔缺损（ASD）和室间隔缺损（VSD）患者的生活质量结局的区域差异。
从先天性心脏病成人患者报告结局模式评估国际研究（APPROACH-IS）中，亚洲、欧洲和北美的405例患者（163例接受Fontan手术，242例为ASD/VSD）同意提供其病历并完成一项评估生活质量的调查（0至100线性模拟量表）。记录原发性先天性心脏病诊断、疾病复杂性、手术史以及情绪和焦虑障碍的记录史。使用协方差分析检查Fontan患者与ASD/VSD患者之间以及不同地理区域之间生活质量、医疗并发症以及情绪和焦虑障碍的差异。进行分层回归分析以确定与生活质量评分相关的变量。
与ASD/VSD患者相比，接受Fontan手术的患者报告的生活质量显著更低，医疗并发症以及情绪和焦虑障碍更多。住院心脏入院、情绪障碍和焦虑障碍与Fontan患者较低的生活质量相关，情绪障碍与ASD/VSD患者较低的生活质量相关。在接受Fontan手术的患者中未观察到生活质量的区域差异；然而，在ASD/VSD患者中发现了显著差异。
先天性心脏病成人患者生活质量的区域差异很常见；然而，它似乎受更大疾病负担的影响。在接受Fontan手术的患者中，生活质量的区域差异消失了。对先天性心脏病患者进行生活质量以及情绪和焦虑障碍筛查的具体尝试可能会改善对疾病负担最大的患者的护理。
