@Article{chd.12583,
AUTHOR = {Christina E. Holbein, Nicholas D. Fogleman, Kevin Hommel, Silke Apers, Jessica Rassart, Philip Moons, Koen Luyckx, Maayke A. Sluman, Junko Enomoto, Bengt Johansson, Hsiao-Ling Yang, Mikael Dellborg, Raghavan Subramanyan, Jamie L. Jackson, Werner Budts, Adrienne H. Kovacs, Stacey Morrison, Martha Tomlin, Kathy Gosney, Alexandra Soufi, Katrine Eriksen, Corina Thomet, Malin Berghammer, Luis Alday, Edward Callus, Susan M Fernandes, Maryanne Caruana, Samuel Menahem, Stephen C. Cook, Gwen R. Rempel, Kamila White, Paul Khairy, Shelby Kutty, Gruschen Veldtman},
TITLE = {A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {13},
YEAR = {2018},
NUMBER = {3},
PAGES = {392--400},
URL = {http://www.techscience.com/schd/v13n3/38992},
ISSN = {3071-1738},
ABSTRACT = {<b>Objective:</b> First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular
septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association
between congenital heart disease (CHD) diagnosis and QOL.<br/>
<b>Design:</b> Cross-sectional observational study.<br/>
<b>Setting:</b> Twenty-four cardiology centers from 15 countries across five continents.<br/>
<b>Patients:</b> Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and
258 ASD/VSD) ages 18-83 years.<br/>
<b>Outcome Measures:</b> QOL and illness perceptions were assessed by the Satisfaction With Life
Scale and the Brief Illness Perceptions Questionnaire, respectively.<br/>
<b>Results:</b> Patients with a Fontan circulation reported lower QOL (Wald Z = -3.59, p 5 <.001) and
more negative perceptions of their CHD (Wald Z = -7.66, p < .001) compared with patients with
ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart
Association functional class, path analyses revealed a significant mediation model, αβ = 0.15,
p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions.<br/>
<b>Conclusions:</b> The Fontan sample’s more negative perceptions of CHD were likely a reflection of
life with a more complex defect. Illness perceptions appear to account for unique differences in
QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be
important treatment components for patients with CHD, particularly those with Fontan circulations.},
DOI = {10.1111/chd.12583}
}