INFLUENCE OF CARDIAC INTERVENTION ON NEURODEVELOPMENT IN YOUNG CHILDREN WITH CONGENITAL HEART DISEASE IN CENTRAL SOUTH AFRICA: EARLY OUTCOMES

Smith R.^1,2, Brown S.³, Ntsiea V.¹, Potterton J.¹

¹University of the Witwatersrand, Physiotherapy, Johannesburg, South Africa, ²University of the Free State, Physiotherapy, Bloemfontein, South Africa, ³University of the Free State, Paediatrics and Child Health, Bloemfontein, South Africa

Background: Medical and surgical advances have resulted in around 85% of children born with congenital heart disease (CHD) now surviving into adulthood. As a result, CHD has become one of the fastest growing chronic health conditions in childhood. CHD survivors are at high-risk of neurodevelopmental morbidity which negatively affects their quality of life. Many children with CHD in South Africa (SA) are not being diagnosed or receiving services resulting in late diagnoses, delayed access to care and lengthy waiting periods for surgery which impacts on longer-term outcome. The neurodevelopmental outcomes of young children living with CHD in SA are unknown.

Purpose: To determine the neurodevelopmental outcome of young children with CHD in central SA prior to cardiac intervention and at three-month and six-month post-cardiac intervention.

Methods: The study was observational and descriptive in nature. Forty children younger than 30 months and their parents, who met the inclusion criteria, were recruited into the study at the Paediatric Cardiology Unit at Universitas Academic Hospital in Bloemfontein. Development was assessed using the Bayley Scales of Infant and Toddler Development, Third Edition. Developmental outcomes were compared over time, and variables associated with developmental outcome were determined.

Results: The majority of the children (n=30) were of black African ethnicity. Most (n=26) underwent open-heart surgery in infancy with cardiopulmonary bypass. Disease severity was moderate (n=30) in most cases. A quarter of the children (n=10) were diagnosed with Down syndrome (DS). Over the study period 29% of the children presented with delayed development; with 12% having a delay in one area of development and 17% delays in two or more areas of development. Motor delays were most prevalent (27.5%) prior cardiac intervention. Motor performance improved, but language and cognitive performance declined post-cardiac intervention, with increasing age and skill complexity. There was no significant change in the developmental outcome over time. DS was the variable most significantly (p 0.001) associated with developmental outcome. Children with DS tended to have poorer developmental outcomes. Disease severity (p=0.02), maternal age (p 0.001), age at first surgery (p 0.01), and growth prior to cardiac intervention (p=0.04) were also significantly associated with developmental outcome. Overall developmental performance on the BSID-III was below the expected developmental levels for children with CHD. Hypotonia was present in 45% of the children prior to cardiac intervention, but tended to resolve by the six-month post-cardiac intervention in children without DS. Most families were from a low socioeconomic background (87.5%), and only 40% of mothers had graduated high school.

Conclusion(s): The longer-term outcomes of children with CHD in central SA were not vastly different from those of children in developed countries. The greater extent of the growth retardation and developmental delay of children is likely attributable socioeconomic disadvantage. Based on developmental performance 59% of the children would qualify for referral to early intervention services.

Implications: The findings in this study strongly support the implementation of a cardiac neurodevelopmental programme as part standard cardiac care in SA. Early developmental interventions are indicated to optimise outcomes for children living with CHD in central SA.

Funding acknowledgements: SASP Research Foundation Grant
Wits FRC Individual Research Grant
NRF Sabbatical Grant
UFS staff support grant
Prof. Stephen Brown

Topic: Paediatrics

Ethics approval: Faculty of Health Sciences, University the Free State (ECUFS 177/2013) Committee for Research on Human Subjects, University of Witwatersrand (M131056)

All authors, affiliations and abstracts have been published as submitted.