背景:在复杂的危重新生儿和儿科临床实践中,对患者的长期结局以及对患者最有价值的后续护理知之甚少.艾玛儿童医院,阿姆斯特丹UMC(荷兰),为新生儿和儿科患者组实施了一项名为FollowMe的后续计划,为了更深入地了解长期结果,并利用这些结果来实施临床实践的学习周期,改善后续护理并促进研究。三个部门启动了重新设计和变更流程。每个人都引入了多学科方法来进行长期后续行动,包括为定义的年龄组定期进行标准化检查,根据医学指标,发展进步,以及患者及其家人的社会心理结果。这项研究评估了三个后续计划的实施情况,将预定义的程序(按想象工作)与程序在实践中的实施方式(按完成工作)进行比较。
方法:本研究于2019-2020年在新生儿重症监护门诊进行,艾玛儿童医院儿科重症监护和儿科外科。它侧重于后续护理的组织结构。应用功能共振分析方法(FRAM),使用文献分析,半结构化面试,观察和反馈会议。
结果:描述了一个按想象工作的模型和四个按完成工作的模型。结果显示了大量的医疗数据收集,所有工作即做模型中的发展和社会心理指标;然而,缺少方案有效性和绩效的过程指标。实际上,角色和责任及其相互关系的分配是多种多样的,以建立一个多学科小组;不同部门之间没有一刀切的做法。尽管方案中的后续小组规定了长期结果的控制和反馈循环,发现它们与其他内部和外部长期结果监测实践重叠和不一致。
结论:实施结构化的长期随访可能为改善日常实践和后续护理提供见解,以标准化测量为前提。从实践中获得的经验教训是(1)解决数据收集和存储中的碎片化,(2)在实践中融入多元化的方式,创建多学科团队,(3)包括有关计划有效性和绩效的及时可操作的指标,除了医疗,发展和社会心理指标。
BACKGROUND: In complex critical neonatal and paediatric clinical practice, little is known about long-term patient outcomes and what follow-up care is most valuable for patients. Emma Children\'s Hospital, Amsterdam UMC (Netherlands), implemented a follow-up programme called Follow Me for neonatal and paediatric patient groups, to gain more insight into long-term outcomes and to use such outcomes to implement a learning cycle for clinical practice, improve follow-up care and facilitate research. Three departments initiated re-engineering and change processes. Each introduced multidisciplinary approaches to long-term follow-up, including regular standardised check-ups for defined age groups, based on medical indicators, developmental progress, and psychosocial outcomes in patients and their families. This research evaluates the implementation of the three follow-up programmes, comparing predefined procedures (work-as-imagined) with how the programmes were implemented in practice (work-as-done).
METHODS: This study was conducted in 2019-2020 in the outpatient settings of the neonatal intensive care, paediatric intensive care and paediatric surgery departments of Emma Children\'s Hospital. It focused on the organisational structure of the follow-up care. The functional resonance analysis method (FRAM) was applied, using documentary analysis, semi-structured interviews, observations and feedback sessions.
RESULTS: One work-as-imagined model and four work-as-done models were described. The results showed vast data collection on medical, developmental and psychosocial indicators in all work-as-done models; however, process indicators for programme effectiveness and performance were missing. In practice there was a diverse allocation of roles and responsibilities and their interrelations to create a multidisciplinary team; there was no one-size-fits-all across the different departments. Although control and feedback loops for long-term outcomes were specified with respect to the follow-up groups within the programmes, they were found to overlap and misalign with other internal and external long-term outcome monitoring practices.
CONCLUSIONS: Implementing structured long-term follow-up may provide insights for improving daily practice and follow-up care, with the precondition of standardised measurements. Lessons learned from practice are (1) to address fragmentation in data collection and storage, (2) to incorporate the diverse ways to create a multidisciplinary team in practice, and (3) to include timely actionable indicators on programme effectiveness and performance, alongside medical, developmental and psychosocial indicators.