Need for Routine Screening of Health-Related Quality of Life in Families of Young Children with Complex Congenital Heart Disease - 24/01/19
![](/templates/common/images/mail.png)
Abstract |
Objectives |
To assess health-related quality of life (HRQOL) in families of young children with complex congenital heart disease (CHD), and identify the demographic, clinical, and psychosocial factors that place these children and their mothers at greater risk of vulnerability.
Study design |
This cross-sectional study took place from June 2015 to October 2016 at The Sydney Children's Hospitals Network Cardiac Service, Australia. Mothers of a child aged 1-5 years with either single ventricle CHD or CHD requiring neonatal biventricular repair were invited to participate. Eighty-seven mothers completed a suite of validated measures, including the Pediatric Quality of Life Inventory, which assessed the outcomes of child and maternal HRQOL.
Results |
Sixty percent of children with single ventricle CHD and 25% of children with biventricular repair had total Pediatric Quality of Life Inventory scores within the at-risk range. Lower child HRQOL was strongly associated with single ventricle CHD (β = −0.38; P < .001), physical comorbidity (β = −0.32; P = .001), feeding difficulties (β = −0.26; P = .008), and greater maternal psychological stress (β = −0.18; P = .045), accounting for 52% of the variance in child HRQOL. Lower maternal HRQOL was strongly associated with poorer family functioning (β = 0.61; P < .001), greater maternal psychological stress (β = −0.23; P = .004), child physical comorbidity (β = −0.17; P = .01), and a ‘difficult’ child temperament (β = −0.14; P = .01), accounting for 73% of the variance in maternal HRQOL.
Conclusions |
Lower HRQOL is common in young children with complex CHD, particularly single ventricle CHD. Several predictors of HRQOL are potentially modifiable, offering possible pathways for prevention and early intervention. Routine screening is a necessary first step toward developing models of care to improve HRQOL in this population.
Le texte complet de cet article est disponible en PDF.Keywords : congenital heart disease, quality of life, psychological stress, child development, mental health, psychosocial screening, integrated care
Abbreviations : CHD, HRQOL, PedsQL, SCHN
Plan
Supported by a Project Grant from the National Health and Medical Research Council of Australia (NHMRC APP1081001 [to N.K.]). N.K. received the National Heart Foundation of Australia Future Leader Fellowship (101229), and a 2018-2019 Harkness Fellowship in Health Care Policy and Practice from the Commonwealth Fund. The authors declare no conflicts of interest. |
|
Potions of this study were presented at the World Congress of Pediatric Cardiology and Cardiac Surgery, July 16-21, 2017, Barcelona, Spain. |
Vol 205
P. 21 - février 2019 Retour au numéroBienvenue sur EM-consulte, la référence des professionnels de santé.
L’accès au texte intégral de cet article nécessite un abonnement.
Déjà abonné à cette revue ?