Heart and Lung Directorate, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK
NIHR Great Ormond Street Hospital Biomedical Research Centre, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK.
Arch Dis Child. 2021 Mar;106(3):263-271. doi: 10.1136/archdischild-2019-317824. Epub 2020 Sep 9.
To describe neurodevelopment and follow-up services in preschool children with heart disease (HD).
Secondary analysis of a prospectively collected multicentre dataset.
Three London tertiary cardiac centres.
Preschool children<5 years of age: both inpatients and outpatients.
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.
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.
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.
描述心脏病（HD）学龄前儿童的神经发育和随访服务。
对前瞻性收集的多中心数据集进行二次分析。
伦敦三个三级心脏中心。
学龄前儿童<5 岁：包括住院和门诊患者。
我们分析了 2014 年 1 月至 2015 年 7 月期间在之前的一项研究中评估的具有代表性的便利样本中，Mullen 早期学习量表（MSEL）的结果和父母对随访服务的报告。
在 971 名学龄前儿童中：577 名（59.4%）有≥1 次心脏手术，236 名（24.3%）有与发育迟缓（DD）相关的已知诊断（“已知组”），130 名（13.4%）有与 DD 相关的临床事件史。在 MSEL 评估中，643 名（66.2%）发育正常，181 名（18.6%）边缘分数，147 名（15.1%）分数表明有 DD。在 971 名儿童中，有 609 名（62.7%）未接受与儿童发育相关的随访服务，更有可能接受这些服务，他们有已知组诊断、与 DD 相关的临床事件史和 DD（由 MSEL 定义）。在 236 名已知组中，77 名儿童的家长（32.6%）和 48 名非已知组但有 DD 的儿童的家长（60.4%）没有报告任何与儿童发育相关的随访。由 MSEL 评估定义的 DD 更可能与已知组和评估时的年龄较大有关。
我们的研究结果表明，对于 HD 学龄前儿童，应考虑制定和评估“结构性神经发育随访途径”，随着儿童年龄的增长，尤其应关注高风险儿童。
