Health related quality of life in children following Fontan surgery: A Malaysian perspective

Background: Children with Fontan circulation suffer from morbidities and physical limitations that affect their quality of life. The study examined the health-related quality of life (HRQoL) of children in Malaysia following the Fontan procedure. Methods: All patients who are 8 years and older and w...

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Main Authors: Leong, Ming Chern, Mohamed, Mohamed Ajmal Haj, Basran, Nurul Fazira, Azeman, Nor Athirah
Format: Article
Language:English
Published: Elsevier Ireland 2024
Online Access:http://psasir.upm.edu.my/id/eprint/116014/
http://psasir.upm.edu.my/id/eprint/116014/1/116014.pdf
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author Leong, Ming Chern
Mohamed, Mohamed Ajmal Haj
Basran, Nurul Fazira
Azeman, Nor Athirah
author_facet Leong, Ming Chern
Mohamed, Mohamed Ajmal Haj
Basran, Nurul Fazira
Azeman, Nor Athirah
author_sort Leong, Ming Chern
building UPM Institutional Repository
collection Online Access
description Background: Children with Fontan circulation suffer from morbidities and physical limitations that affect their quality of life. The study examined the health-related quality of life (HRQoL) of children in Malaysia following the Fontan procedure. Methods: All patients who are 8 years and older and who had undergone Fontan palliation for at least 1 year were assessed using electronically distributed, aged-based Pediatric Quality of Life Inventory™ (PedsQL) Generic and Cardiac modules. The scores from the patients were compared with those of aged-match students in the Klang Valley and patient's parents. Results: A total of 133 patients [time after Fontan: 6.24 years (IQR: 2.54, 8.54); SpO2: 92 % (IQR: 88, 95)] and parents and 130 normal subjects participated in the study. Fontan patients have reduced HRQOL scores compared to their healthy peers in almost all domains. Patients with NYHA class I demonstrated higher PedsQL scores in almost all domains. Patients with SpO2 < 95 % and taking more medication had lower PedsQL scores in total and physical score. Similarly, those with many complications show significantly low PedsQL scores in all domains. There was poor agreement between patients' and parents' perceived HRQoL in most of the domains in the generic module, but the difference was not as explicit in the cardiac module. Conclusions: Fontan patients had a lower perceived quality of life compared to healthy controls. Physical ability and Fontan complications influenced the perceived quality of life, especially in younger children. Parents generally underestimate the impact of Fontan towards their children's quality of life. © 2024 Elsevier B.V.
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spelling upm-1160142025-03-19T01:07:17Z http://psasir.upm.edu.my/id/eprint/116014/ Health related quality of life in children following Fontan surgery: A Malaysian perspective Leong, Ming Chern Mohamed, Mohamed Ajmal Haj Basran, Nurul Fazira Azeman, Nor Athirah Background: Children with Fontan circulation suffer from morbidities and physical limitations that affect their quality of life. The study examined the health-related quality of life (HRQoL) of children in Malaysia following the Fontan procedure. Methods: All patients who are 8 years and older and who had undergone Fontan palliation for at least 1 year were assessed using electronically distributed, aged-based Pediatric Quality of Life Inventory™ (PedsQL) Generic and Cardiac modules. The scores from the patients were compared with those of aged-match students in the Klang Valley and patient's parents. Results: A total of 133 patients [time after Fontan: 6.24 years (IQR: 2.54, 8.54); SpO2: 92 % (IQR: 88, 95)] and parents and 130 normal subjects participated in the study. Fontan patients have reduced HRQOL scores compared to their healthy peers in almost all domains. Patients with NYHA class I demonstrated higher PedsQL scores in almost all domains. Patients with SpO2 < 95 % and taking more medication had lower PedsQL scores in total and physical score. Similarly, those with many complications show significantly low PedsQL scores in all domains. There was poor agreement between patients' and parents' perceived HRQoL in most of the domains in the generic module, but the difference was not as explicit in the cardiac module. Conclusions: Fontan patients had a lower perceived quality of life compared to healthy controls. Physical ability and Fontan complications influenced the perceived quality of life, especially in younger children. Parents generally underestimate the impact of Fontan towards their children's quality of life. © 2024 Elsevier B.V. Elsevier Ireland 2024 Article PeerReviewed text en http://psasir.upm.edu.my/id/eprint/116014/1/116014.pdf Leong, Ming Chern and Mohamed, Mohamed Ajmal Haj and Basran, Nurul Fazira and Azeman, Nor Athirah (2024) Health related quality of life in children following Fontan surgery: A Malaysian perspective. Progress in Pediatric Cardiology, 75. art. no. 101757. ISSN 1058-9813; eISSN: 1558-1519 https://linkinghub.elsevier.com/retrieve/pii/S1058981324000559 10.1016/j.ppedcard.2024.101757
spellingShingle Leong, Ming Chern
Mohamed, Mohamed Ajmal Haj
Basran, Nurul Fazira
Azeman, Nor Athirah
Health related quality of life in children following Fontan surgery: A Malaysian perspective
title Health related quality of life in children following Fontan surgery: A Malaysian perspective
title_full Health related quality of life in children following Fontan surgery: A Malaysian perspective
title_fullStr Health related quality of life in children following Fontan surgery: A Malaysian perspective
title_full_unstemmed Health related quality of life in children following Fontan surgery: A Malaysian perspective
title_short Health related quality of life in children following Fontan surgery: A Malaysian perspective
title_sort health related quality of life in children following fontan surgery: a malaysian perspective
url http://psasir.upm.edu.my/id/eprint/116014/
http://psasir.upm.edu.my/id/eprint/116014/
http://psasir.upm.edu.my/id/eprint/116014/
http://psasir.upm.edu.my/id/eprint/116014/1/116014.pdf