Neurodevelopmental status and follow-up in preschool children with heart disease in London, UK. Issue 3 (9th September 2020)

• Record Type: Journal Article
• Authors: Hoskote, Aparna; Ridout, Deborah; Banks, Victoria; Kakat, Suzan; Lakhanpaul, Monica; Pagel, Christina; Franklin, Rodney CG; Witter, Thomas; Lakhani, Rhian; Tibby, Shane M; Anderson, David; Tsang, Victor; Wray, Jo; Brown, Katherine
• Is Part Of: Archives of disease in childhood. Volume 106:Issue 3(2021)
• Page Start: 263
• Page End: 271
• Publication Date: 2020-09-09
• Subjects: congenital heart disease -- neurology -- early recognition tool -- surveillance -- child development; Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2019-317824
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Objective: To describe neurodevelopment and follow-up services in preschool children with heart disease (HD). Design: Secondary analysis of a prospectively collected multicentre dataset. Setting: Three London tertiary cardiac centres. Patients: Preschool children<5 years of age: both inpatients and outpatients. Methods: We 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. Results: Of 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. Conclusions: Our 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.