TY - JOUR
T1 - Regional variation in quality of life in patients with a Fontan circulation
T2 - A multinational perspective
AU - Fogleman, Nicholas D.
AU - Apers, Silke
AU - Moons, Philip
AU - Morrison, Stacey
AU - Wittekind, Samuel G.
AU - Tomlin, Martha
AU - Gosney, Kathy
AU - Sluman, Maayke A.
AU - Johansson, Bengt
AU - Enomoto, Junko
AU - Dellborg, Mikael
AU - Lu, Chun Wei
AU - Subramanyan, Raghavan
AU - Luyckx, Koen
AU - Budts, Werner
AU - Jackson, Jamie
AU - Kovacs, Adrienne
AU - Soufi, Alexandra
AU - Eriksen, Katrine
AU - Thomet, Corina
AU - Berghammer, Malin
AU - Callus, Edward
AU - Fernandes, Susan M.
AU - Caruana, Maryanne
AU - Cook, Stephen C.
AU - Mackie, Andrew S.
AU - White, Kamila S.
AU - Khairy, Paul
AU - Kutty, Shelby
AU - Veldtman, Gruschen
N1 - Funding Information:
This work was supported by the Research Fund–KU Leuven (Belgium) through grant OT/11/033 ; by the Swedish Heart and Lung Foundation (Sweden); by the Gothenburg Person-Centered Care Center ; and the Cardiac Children's Foundation (Taiwan). Furthermore, this work was endorsed by the International Society for Adult Congenital Heart Disease. The study protocol was recorded at ClinicalTrials.gov : NCT02150603 .
Publisher Copyright:
© 2017 Elsevier Inc.
PY - 2017/11
Y1 - 2017/11
N2 - Background 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). Methods 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. Results 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. Conclusions 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.
AB - Background 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). Methods 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. Results 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. Conclusions 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.
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U2 - 10.1016/j.ahj.2017.07.019
DO - 10.1016/j.ahj.2017.07.019
M3 - Article
C2 - 29129255
AN - SCOPUS:85028920376
SN - 0002-8703
VL - 193
SP - 55
EP - 62
JO - American heart journal
JF - American heart journal
ER -