Wray Jo, Brown Katherine L, Ridout Deborah, Lakhanpaul Monica, Smith Liz, Scarisbrick Angie, O'Curry Sara, Hoskote Aparna
1Charles West Division,Great Ormond Street Hospital for Children NHS Foundation Trust,Great Ormond Street,London,United Kingdom.
2Population, Policy and Practice Programme,UCL Great Ormond Street Institute of Child Health,London,United Kingdom.
Cardiol Young. 2018 Apr;28(4):582-591. doi: 10.1017/S1047951117002918. Epub 2018 Feb 13.
Introduction Neurodevelopmental abnormalities are common in children with CHD and are the highest-priority concerns for parents and professionals following cardiac surgery in childhood. There is no additional routine monitoring of development for children with CHD in the United Kingdom; hence, neurodevelopmental concerns may be detected late, precluding early referral and intervention.
An early recognition tool - the "Brief Developmental Assessment" - was developed using quality improvement methodology involving several iterations and rounds of pilot testing. Our requirements were for a tool covering important developmental domains and practicable for use within inpatient and outpatient settings by paediatric cardiac health professionals who are non-developmental specialists, without specialised equipment and which involved direct observation, as well as parental report.
Items were included in the tool based on existing developmental measures, covering the domains of gross and fine motor skills, daily living skills, communication, socialisation, and general understanding. Items were developed for five age bands - 0-16 weeks, 17-34 weeks, 35-60 weeks, 15 months-2.9 years, and 3-4.9 years - and the final versions included a traffic light scoring system for identifying children with possible delay in any or all domains. Preliminary testing indicated excellent inter-rater reliability, an ability to detect children with a diagnosis known to be associated with developmental delay, and largely acceptable internal reliability.
We report the evolution and preliminary testing of an early recognition tool for assessing the development of children with heart disease; this was encouraging and sufficiently good to support further validation in a larger study.
引言 神经发育异常在患有先天性心脏病（CHD）的儿童中很常见，是儿童心脏手术后家长和专业人员最关注的问题。在英国，没有针对患有CHD的儿童进行额外的常规发育监测；因此，神经发育问题可能会被发现得较晚，从而无法进行早期转诊和干预。
使用质量改进方法开发了一种早期识别工具——“简要发育评估”，该方法涉及多次迭代和多轮试点测试。我们的要求是该工具涵盖重要的发育领域，对于非发育专科的儿科心脏健康专业人员在住院和门诊环境中使用是可行的，无需专门设备，且涉及直接观察以及家长报告。
基于现有的发育测量方法将项目纳入该工具，涵盖大运动和精细运动技能、日常生活技能、沟通、社交和一般理解等领域。为五个年龄组——0 - 16周、17 - 34周、35 - 60周、15个月至2.9岁以及3 - 4.9岁——开发了项目，最终版本包括一个交通信号灯评分系统，用于识别在任何或所有领域可能存在发育迟缓的儿童。初步测试表明评分者间信度极佳，能够检测出已知与发育迟缓相关诊断的儿童，并且内部信度在很大程度上是可接受的。
我们报告了一种用于评估患有心脏病儿童发育情况的早期识别工具的演变和初步测试；结果令人鼓舞且足够良好，足以支持在更大规模研究中进行进一步验证。
