Neurodevelopmental status and follow-up in preschool children with heart disease in London, UK

Abstract

ObjectiveTo describe neurodevelopment and follow-up services in preschool children with heart disease (HD).DesignSecondary analysis of a prospectively collected multicentre dataset.SettingThree London tertiary cardiac centres.PatientsPreschool children<5 years of age: both inpatients and outpatients.MethodsWe analysed results of Mullen Scales of Early Learning (MSEL) and parental report of follow-up services in a representative convenience sample evaluated between January 2014 and July 2015 within a previous study.ResultsOf 971 preschool children: 577 (59.4%) had ≥1 heart operation, 236 (24.3%) had a known diagnosis linked to developmental delay (DD) (‘known group’) and 130 (13.4%) had history of clinical event linked to DD. On MSEL assessment, 643 (66.2%) had normal development, 181 (18.6%) had borderline scores and 147 (15.1%) had scores indicative of DD. Of 971 children, 609 (62.7%) were not receiving follow-up linked to child development and were more likely to be under these services with a known group diagnosis, history of clinical event linked to DD and DD (defined by MSEL). Of 236 in known group, parents of 77 (32.6%) and of 48 children not in a known group but with DD 29 (60.4%), reported no child development related follow-up. DD defined by MSEL assessment was more likely with a known group and older age at assessment.ConclusionsOur findings indicate that a ‘structured neurodevelopmental follow-up pathway’ in preschool children with HD should be considered for development and evaluation as children get older, with particular focus on those at higher risk.

Social cognition and competence in preschoolers with congenital heart disease.

“…However, gathering information from more than one respondent (e.g., teacher, both parents) could be considered in future research. Last, it is noteworthy that children recruited in this study consisted predominantly of children with two-ventricle CHD, the majority of whom were without aortic obstruction, which are known to have better neurodevelopmental outcomes than those having one-ventricle anatomy with aortic obstruction (Hoskote et al, 2020). The relatively low risk of this sample may also explain the results obtained.…”

Lessons From the Queensland Paediatric Cardiac Service Neurodevelopmental Follow-up Programme

“…An early recognition tool for use by nondevelopmental practitioners to enable a referral care pathway across health sectors has been developed and validated, with how developmental follow-up can be best implemented long-term within the local context to be determined. 23,24 Consistent with the Canadian experience, we also identify the ongoing work needed to ensure an improved understanding of current national neurodevelopmental follow-up care practices and to develop and implement national policy and standards. In partnership with the Australian Centre for Health Services Innovation, all Australian cardiac centres, neurodevelopmental experts, HeartKids and Children's Hospital Foundation, the CHD LIFEþ programme of research is underway to develop family-centred care models to support long-term neurodevelopment for children with CHD nationally (Medical Research Future Fund ARGCHDG0035).…”

Postoperative morbidities with infant cardiac surgery and toddlers’ neurodevelopment

“…The primary measure of outcome was Bayley-III 11. Secondary measures of outcome were the ASQ12 and SDQ 13 14. These outcome measures are presented in table 1, including derivation of the red, amber, green scoring.…”

“…In addition, we aimed to identify children at higher risk of neurodevelopmental difficulties, in order to inform efforts to improve follow-up. Such improvements are needed given the recent study by Hoskote et al , which illustrated how preschool children with CHD may not receive routine neurodevelopmental follow-up to mitigate against developmental delay 12…”