Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective.

Nicholas D. Fogleman, Nicholas D. Fogleman, Silke Apers, Philip Moons, Philip Moons, Stacey Morrison, Samuel G. Wittekind, Martha Tomlin, Kathy Gosney, Maayke A. Sluman, Bengt Johansson, Junko Enomoto, Mikael Dellborg, Chun Wei Lu, Raghavan Subramanyan, Koen Luyckx, Werner Budts, Jamie Jackson, Adrienne Kovacs, Alexandra SoufiKatrine Eriksen, Corina Thomet, Malin Berghammer, Malin Berghammer, Edward Callus, Susan M. Fernandes, Maryanne Caruana, Stephen C. Cook, Andrew S. Mackie, Kamila S. White, Paul Khairy, Shelby Kutty, Gruschen Veldtman

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageAmerican English
JournalAmerican Heart Journal
Volume193
DOIs
StatePublished - Nov 1 2017
Externally publishedYes

Disciplines

  • Pediatrics
  • Medicine and Health Sciences

Cite this