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A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.

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?

SUBMITTER: Holbein CE

PROVIDER: S-EPMC5993574 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.

Holbein Christina E CE Fogleman Nicholas D ND Hommel Kevin K Apers Silke S Rassart Jessica J Moons Philip P Luyckx Koen K Sluman Maayke A MA Enomoto Junko J Johansson Bengt B Yang Hsiao-Ling HL Dellborg Mikael M Subramanyan Raghavan R Jackson Jamie L JL Budts Werner W Kovacs Adrienne H AH Morrison Stacey S Tomlin Martha M Gosney Kathy K Soufi Alexandra A Eriksen Katrine K Thomet Corina C Berghammer Malin M Alday Luis L Callus Edward E Fernandes Susan M SM Caruana Maryanne M Menahem Samuel S Cook Stephen C SC Rempel Gwen R GR White Kamila K Khairy Paul P Kutty Shelby S Veldtman Gruschen G

Congenital heart disease 20180103 3

<h4>Objective</h4>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.<h4>Design</h4>Cross-sectional observational study.<h4>Setting</h4>Twenty-four cardiology centers from 15 countries across five continents.<h4>Pati ...[more]

PMID: 29457362

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Project description:IntroductionAdvances in the care of patients with single-ventricle congenital heart disease have led to a new generation of individuals living with a Fontan circulation. For people with Fontan physiology, physical, psychological and neurodevelopmental challenges are common. The objective of this study is to describe and develop a deeper understanding of the factors that contribute to quality of life (QOL) among children, adolescents and adults living with a Fontan circulation across Australia and New Zealand, their parents and siblings.Methods and analysisThis article presents the protocol for the Australian and New Zealand Fontan Registry (ANZFR) QOL Study, a cross-sectional, population-based study designed to examine QOL among people of all ages with a Fontan circulation, their parents and siblings. Study eligibility criteria includes (1) individuals with a Fontan circulation aged ≥6 years, at least 12 months post-Fontan procedure and enrolled in the ANZFR; (2) parents of individuals enrolled in the ANZFR; and (3) siblings aged ≥6 years of an individual enrolled in the ANZFR. A novel, online research platform is used to distribute personalised assessments tailored to participant age and developmental stage. A suite of validated psychometric self-report and parent-proxy report instruments capture potential correlates and predictors of QOL, including symptoms of psychological distress, personality attributes, coping and cognitive appraisals, family functioning, healthcare experiences and costs, access to emotional support and socioeconomic factors. Clinical characteristics are captured via self-report and parent-proxy report, as well as the ANZFR. Descriptive analyses and multilevel models will be used to examine QOL across groups and to investigate potential explanatory variables.Ethics and disseminationApproval has been obtained from all relevant Human Research Ethics Committees (HRECs), including the Sydney Children's Hospitals Network and the Royal Children's Hospital Melbourne HRECs. Study findings will be published in peer-reviewed journals and presented at national and international meetings and seminars.

Dataset Information

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.

Publications

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.

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