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英国新生儿神经发育随访:当前实践与未来建议的调查

Neonatal neurodevelopmental follow-up in the UK: a survey of current practice and future recommendations.

作者信息

Marcroft Claire, Cruickshank Hilary, Johnson Samantha, Exley Catherine, Kolehmainen Niina, Thomson Richard, Basu Anna

机构信息

Newcastle Neonatal Service, Newcastle upon Tyne NHS Foundation Trust, Royal Victoria Infirmary, Newcastle Upon Tyne, England, UK.

Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK.

出版信息

BMC Pediatr. 2025 Sep 1;25(1):674. doi: 10.1186/s12887-025-05960-7.

DOI:10.1186/s12887-025-05960-7
PMID:40890728
Abstract

BACKGROUND

To assess the clinical service provision of neonatal follow-up services in the UK in line with UK National Institute for Health and Care Excellence (NICE) guideline NG72, 'Developmental follow-up of children and young people born preterm'.

METHODS

Design: Online survey.

SETTING

Neonatal units in England, Scotland and Wales (n = 187) in July- September 2022.

PARTICIPANTS

Lead neonatal clinicians for neurodevelopmental follow-up.

RESULTS

Responses were received from 154 neonatal units, representing 82% of the total. This included 52 out of 58 (89%) Neonatal Intensive Care Units, 68 out of 86 (79%) Local Neonatal Units, and 34 out of 43 (79%) Special Care Baby Units. In total, 136 units (88%) provided neurodevelopmental follow-up for infants born before 30 weeks' gestation, and 75 units (51%) did so for those born before 32 weeks' gestation. Out of 145 responses, 134 units (92%) offered follow-up to infants with brain injury requiring cooling therapy. A 2-year neurodevelopmental face-to-face appointment was available for infants born before 30 weeks' gestation in 129 units (83%), while only ten units (6%) provided a 4-year assessment for those born before 28 weeks' gestation. Additionally, just 13 units (9.6%) directed families to peer support services.

CONCLUSIONS

The structure and content of neonatal neurodevelopmental follow-up vary widely. Notably, there is a lack of 4-year assessments for infants born preterm, representing a missed opportunity to support school readiness.

KEY MESSAGES

What is already known on this topic? Neonatal neurodevelopmental follow-up is a vital aspect of care for early detection of difficulties, timely access to intervention, promotion of long-term health and wellbeing and data collection to contribute to parental counselling. Delivery of neonatal follow-up in line with UK clinical guidelines has not been evaluated. What this study hopes to add. There is wide variation in the inclusion criteria, content, and duration of neonatal neurodevelopmental follow-up in the UK. Only 6.8% of services reported offering infants born < 28 weeks' gestation a face-to-face appointment at four years of age. Recognition that the informational needs of parents may be conflated with the data requirements of clinicians, and this may contribute to suboptimal clinical service provision and limited reliable outcome data. How this study might affect research, practice, or policy. This study highlights the lack of neurodevelopmental surveillance and support for children born < 28 weeks' gestation at four years of age. These data provide evidence for Operational Delivery Networks (ODNs) to understand how neonatal neurodevelopmental follow-up is delivered within their area. This will help inform families about available services, facilitate joint work, and deliver more equitable neonatal follow-up in the UK. Clinicians could improve information sharing with families by signposting to trusted local, community, online, or third-sector support. Further research is necessary to comprehensively understand neonatal and paediatric developmental services from a parent/caregiver perspective and a systems and processes perspective. Clinical policy and guidelines should provide further clarity regarding which services are most appropriate and responsible for delivering this care.

摘要

背景

根据英国国家卫生与临床优化研究所(NICE)指南NG72“早产儿和青少年的发育随访”,评估英国新生儿随访服务的临床服务提供情况。

方法

设计:在线调查。

地点

2022年7月至9月期间,英格兰、苏格兰和威尔士的新生儿病房(n = 187)。

参与者

负责神经发育随访的新生儿科首席临床医生。

结果

收到了154个新生儿病房的回复,占总数的82%。其中包括58个新生儿重症监护病房中的52个(89%)、86个地方新生儿病房中的68个(79%)以及43个特殊护理婴儿病房中的34个(79%)。总体而言,136个病房(88%)为孕周小于30周出生的婴儿提供神经发育随访,75个病房(51%)为孕周小于32周出生的婴儿提供随访。在145份回复中,134个病房(92%)为需要进行冷却治疗的脑损伤婴儿提供随访。129个病房(83%)为孕周小于30周出生的婴儿提供2年的神经发育面对面预约,而只有10个病房(6%)为孕周小于28周出生的婴儿提供4年评估。此外,只有13个病房(9.6%)为家庭提供同伴支持服务。

结论

新生儿神经发育随访的结构和内容差异很大。值得注意的是,对于早产儿缺乏4年评估,这意味着错失了支持其入学准备的机会。

关键信息

关于该主题已知的内容是什么?新生儿神经发育随访是护理的重要方面,有助于早期发现问题、及时获得干预、促进长期健康和福祉以及收集数据以辅助家长咨询。尚未对符合英国临床指南的新生儿随访实施情况进行评估。本研究希望补充的内容。英国新生儿神经发育随访的纳入标准、内容和时长差异很大。只有6.8%的服务机构报告为孕周小于28周出生的婴儿提供4岁时的面对面预约。认识到家长的信息需求可能与临床医生的数据需求相混淆,这可能导致临床服务提供欠佳以及可靠结局数据有限。本研究可能如何影响研究、实践或政策。本研究凸显了对孕周小于28周出生的儿童在4岁时缺乏神经发育监测和支持。这些数据为运营交付网络(ODN)提供了证据,以了解其所在地区新生儿神经发育随访的实施情况。这将有助于告知家庭可获得的服务,促进合作,并在英国提供更公平的新生儿随访。临床医生可以通过向家长推荐可靠的当地、社区、在线或第三部门支持来改善与家庭的信息共享。有必要进行进一步研究,从家长/照顾者角度以及系统和流程角度全面了解新生儿和儿科发育服务。临床政策和指南应进一步明确哪些服务最适合并负责提供此类护理。

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