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儿科遗传癌症风险服务中以儿童和家庭为中心的护理需要一个协调的多学科护理模式:一项范围综述。

A coordinated multidisciplinary model of care is needed for child and family centered care in pediatric genetic cancer risk services: a scoping review.

作者信息

Grant Andrew M, Taylor Natalie, Maguire Jane, de Graves Sharon, Signorelli Christina, Fuentes-Bolanos Noemi A, Tucker Katherine M, Cruickshank Marilyn

机构信息

Sydney Children's Hospital, Sydney, Australia.

University of Technology Sydney, Sydney, Australia.

出版信息

Fam Cancer. 2025 Jun 20;24(3):55. doi: 10.1007/s10689-025-00474-8.

Abstract

Cancer remains a leading cause of death in children/adolescents. Approximately 8-18% of children/adolescents with cancer have an underlying pediatric Genetic Cancer Risk (p-GCR). P-GCR clinics offer surveillance aimed at improving survival outcomes. Yet children/adolescents require more than surveillance protocols to support holistic health. A multidisciplinary model of care (MoC), including Advanced Practice Nurses (APN) is needed. Yet a MoC and formal description of the APN is lacking in p-GCR clinics. To explore existing evidence of holistic, multidisciplinary approaches to care for children/adolescents and families with a p-GCR; to identify how Advanced Practice Nurses (APN) contribute to care delivery in p-GCR services. A scoping review was conducted in three databases: MEDLINE (Ovid), Embase (Ovid) and CINAHL Complete. JBI methodology for conducting and reporting scoping reviews was used to search MEDLINE, Embase and CINAHL Complete. Gray and white literature was considered from 1991 to 2023. Thirty two studies met inclusion criteria. Thirteen aspects of a MoC in p-GCR were identified including: clinic scope, clinic locality, clinicians involved, care coordination, clinic activity, geography, centralisation of care, psychosocial aspects, shared decision making, education, referrals, transition to adult services and research. There were 10 APN roles described that supported the service/organisation and the delivery of holistic care to children/adolescents with a p-GCR. Using a systematic approach, this review identified how services provide care to children/adolescents with a p-GCR and the APN role in these services. A multidisciplinary MoC with dedicated care coordination can enable child and family centred care with a holistic healthcare approach.

摘要

癌症仍然是儿童/青少年死亡的主要原因。约8-18%的患癌儿童/青少年存在潜在的儿童遗传性癌症风险(p-GCR)。p-GCR诊所提供旨在改善生存结果的监测。然而,儿童/青少年需要的不仅仅是监测方案来支持整体健康。需要一种包括高级实践护士(APN)在内的多学科护理模式(MoC)。然而,p-GCR诊所缺乏多学科护理模式及对高级实践护士的正式描述。为了探索针对患有p-GCR的儿童/青少年及其家庭的整体多学科护理方法的现有证据;确定高级实践护士(APN)如何在p-GCR服务中为护理提供做出贡献。在三个数据库中进行了范围综述:MEDLINE(Ovid)、Embase(Ovid)和CINAHL Complete。使用JBI进行和报告范围综述的方法来检索MEDLINE、Embase和CINAHL Complete。考虑了1991年至2023年的灰色和白色文献。32项研究符合纳入标准。确定了p-GCR多学科护理模式的13个方面包括:诊所范围、诊所地点、参与的临床医生、护理协调、诊所活动、地理位置、护理集中化、心理社会方面、共同决策、教育、转诊、向成人服务的过渡和研究。描述了10种APN角色,这些角色支持为患有p-GCR的儿童/青少年提供服务/组织及整体护理。本综述采用系统方法,确定了服务机构如何为患有p-GCR的儿童/青少年提供护理以及APN在这些服务中的角色。具有专门护理协调的多学科护理模式能够以整体医疗保健方法实现以儿童和家庭为中心的护理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a600/12181217/e8a693d066ff/10689_2025_474_Fig1_HTML.jpg

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