Critical Appraisal of the Evidence on Quality of Life and Psychological Outcomes in Infants and Young Children with Congenital Heart Disease

Abstract

Background: Quality of life (QOL) in young children with congenital heart disease (CHD) is poorly characterised. Better understanding of QOL during these formative years could enable earlier identification of difficulties and timelier intervention. This systematic review aimed to synthesise literature examining QOL, psychosocial and behavioural outcomes in children aged ≤5 years with CHD. It also aimed to identify demographic, clinical, and psychosocial determinants of these outcomes. Methods: A systematic literature search was performed using five electronic databases; Medline, Embase, PsycINFO, CINAHL, Scopus. Articles were included if they reported on parent-proxy or self-report outcomes associated with QOL, emotional wellbeing or behavioural functioning for children with CHD with a mean age of 0-5 years. Risk of bias was appraised using the QualSyst framework. Results: Thirty-eight articles were reviewed, with data from 3,841 children with CHD. Most studies (6/8) assessing QOL found poorer QOL in children with CHD compared to normative data or healthy controls. Emotional functioning was poorer in children with CHD than comparator groups in 13/20 studies. All studies (11/11) assessing adaptive behaviour and functional living skills reported impairments, with a need for clinical intervention indicated in 8-79% of children. Parental stress was the most common predictor of QOL-related outcomes. Conclusion: Young children with CHD demonstrate greater impairment than comparator groups in QOL, emotional wellbeing and behavioural functioning, highlighting the need to identify these problems in clinical settings. Prevalence and determinants of these impairments vary markedly, thus research effort should be directed towards more accurately characterising these outcomes in this population.