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荷兰患有复杂疾病儿童从医院到家庭的过渡:当前实践

Hospital to home transition of children with medical complexities in the Netherlands: current practice.

作者信息

Haspels H N, Knoester H, Jansen N J G, Ahout I M L, van Karnebeek C D, de Hoog M, vanWoensel J B M, Joosten K F M

机构信息

Department of Pediatric Intensive Care, Amsterdam UMC Location University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands.

Amsterdam Reproduction & Development Research Institute, Amsterdam, The Netherlands.

出版信息

Eur J Pediatr. 2025 Jan 8;184(1):122. doi: 10.1007/s00431-024-05960-2.

Abstract

Children with Medical Complexity (CMC) often require 24/7 expert care, which may impede discharge from hospital to home (H2H) resulting in prolonged admission. Limited research exists on pediatric patients with delayed discharges and the underlying reasons for such extended admissions. Therefore, our objectives were to (1) describe the demographics, clinical characteristics, and course of CMC who are in their H2H transition and (2) identify the reasons for postponement of H2H discharge. Prospective, multicenter, observational cohort study performed from February 2022 until November 2022 for 6 months in four Dutch University Medical Center children's hospitals. Clinically admitted patients (age 0-18 years) were eligible for inclusion if they were medically stable, yet required specialized nursing and/or paramedical care and were in the H2H transition process. In total, 44 participants were included, of whom 32 (72.7%) were younger than 1 year. Median stay in the hospital was 7.3 weeks (range 0.7-28.7). Upon entering the H2H phase, postponement of discharge was for 65.1% of the patients primarily due to a combination of medical reasons and organizational/family factors. For the remaining 34.9% of the patients, discharge was delayed solely due to organizational and/or family factors. CONCLUSION : Our study highlights several reasons contributing to the postponement of discharge for pediatric patients with medical complexity, including their medical fragility, the time-consuming process of parent training, and the challenges in organizing home care. Future steps should explore various transitional care programs aimed at improving the H2H transition. What is Known: • Hospital to home transition for Children with Medical Complexity is a multi-faceted process with many challenges and obstacles • Insight into the current practice of transitioning home in University Medical Centers remains unknown and is needed to develop a tailored yet standardized approach What is New: • Our findings reveal reasons for postponement of discharge home and show that patients are medically stable for more than half of their hospital stays. This indicates potential opportunities to reorganize care for better outcomes for the child, the family, and healthcare consumption.

摘要

患有复杂疾病的儿童(CMC)通常需要全天候的专业护理,这可能会阻碍从医院出院回家(H2H),导致住院时间延长。关于延迟出院的儿科患者及其延长住院的潜在原因,现有研究有限。因此,我们的目标是:(1)描述处于H2H过渡阶段的CMC的人口统计学特征、临床特征和病程;(2)确定H2H出院推迟的原因。2022年2月至2022年11月,在荷兰四家大学医学中心儿童医院进行了为期6个月的前瞻性、多中心观察性队列研究。临床收治的患者(年龄0至18岁),如果病情稳定,但需要专门的护理和/或辅助医疗护理,且处于H2H过渡过程中,则符合纳入条件。总共纳入了44名参与者,其中32名(72.7%)年龄小于1岁。住院中位时间为7.3周(范围0.7至28.7周)。进入H2H阶段后,65.1%的患者出院推迟主要是由于医疗原因以及组织/家庭因素的综合作用。对于其余34.9%的患者,出院延迟仅由于组织和/或家庭因素。结论:我们的研究突出了导致患有复杂疾病的儿科患者出院推迟的几个原因,包括他们的医疗脆弱性、家长培训耗时的过程以及组织家庭护理方面的挑战。未来的步骤应该探索各种旨在改善H2H过渡的过渡性护理项目。已知信息:• 患有复杂疾病儿童从医院到家的过渡是一个多方面的过程,有许多挑战和障碍• 对大学医学中心目前的回家过渡实践的了解仍然未知,需要这种了解来制定量身定制但标准化的方法新发现:• 我们的研究结果揭示了出院回家推迟的原因,并表明患者在超过一半的住院时间内病情稳定。这表明有可能重新组织护理,以改善儿童、家庭和医疗保健消费的结果。

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