A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation
Journal
Congenital Heart Disease
Journal Volume
13
Journal Issue
3
Pages
392-400
Date Issued
2018
Author(s)
Holbein C.E.
Fogleman N.D.
Hommel K.
Apers S.
Rassart J.
Moons P.
Luyckx K.
Sluman M.A.
Enomoto J.
Johansson B.
Dellborg M.
Subramanyan R.
Jackson J.L.
Budts W.
Kovacs A.H.
Morrison S.
Tomlin M.
Gosney K.
Soufi A.
Eriksen K.
Thomet C.
Berghammer M.
Alday L.
Callus E.
Fernandes S.M.
Caruana M.
Menahem S.
Cook S.C.
Rempel G.R.
White K.
Khairy P.
Kutty S.
Veldtman G.
APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)
Abstract
Objective: 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. Design: Cross-sectional observational study. Setting: Twenty-four cardiology centers from 15 countries across five continents. Patients: Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. Outcome Measures: QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. Results: Patients with a Fontan circulation reported lower QOL (Wald Z = ?3.59, p = <.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. Conclusions: 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. ? 2018 Wiley Periodicals, Inc.
Subjects
congenital heart disease; Fontan circulation; illness perceptions; quality of life
SDGs
Other Subjects
adult; age; aged; anxiety disorder; Article; Brief Illness Perceptions Questionnaire; cardiovascular disease assessment; congenital heart disease; controlled study; cross-sectional study; depression; female; Fontan procedure; heart atrium septum defect; heart ventricle septum defect; Hospital Anxiety and Depression Scale; human; major clinical study; male; multicenter study; New York Heart Association class; observational study; patient-reported outcome; quality of life; Satisfaction with Life Scale; sex difference; adolescent; attitude to health; child; clinical trial; comparative study; congenital heart malformation; global health; middle aged; morbidity; perception; psychology; quality of life; trends; very elderly; young adult; Adolescent; Adult; Aged; Aged, 80 and over; Attitude to Health; Child; Cross-Sectional Studies; Female; Global Health; Heart Defects, Congenital; Humans; Male; Middle Aged; Morbidity; Perception; Quality of Life; Young Adult
Type
journal article