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免疫固有缺陷的治疗转接。

Transition of care in inborn errors of immunity.

机构信息

Department of Immunology, Royal Free London NHS Foundation Trust.

University College London Institute of Immunity and Transplantation, London, UK.

出版信息

Curr Opin Allergy Clin Immunol. 2023 Dec 1;23(6):455-460. doi: 10.1097/ACI.0000000000000948. Epub 2023 Oct 5.

DOI:10.1097/ACI.0000000000000948
PMID:37797181
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10621636/
Abstract

PURPOSE OF REVIEW

This review outlines the principles of transition, summarizes current information about transition practices in inborn errors of immunity (IEI) and highlights general and specific considerations for transition of patients with these conditions.

RECENT FINDINGS

Recent surveys demonstrate the variability in access to and transition practices in IEI. Key challenges of transition in IEI from the perspective of healthcare professionals include lack of adult subspecialists, lack of access to holistic care and fragmentation of adult services. Limited research focused on IEI patient and carer perspectives highlight information gaps, poor coordination and difficulty adapting to adult healthcare structures as important challenges for smooth transition.

SUMMARY

Local policies and practices for transition in IEI are highly variable with limited assessment of outcomes or patient experience. There is a need for IEI-focused transition research and for development of national and international consensus statements to guide improved transition in IEI.

摘要

目的综述

本文概述了过渡的原则,总结了目前关于先天性免疫缺陷(IEI)过渡实践的信息,并强调了这些疾病患者过渡的一般和特殊考虑因素。

最近的发现

最近的调查显示,IEI 的获得和过渡实践存在差异。从医疗保健专业人员的角度来看,IEI 过渡的主要挑战包括缺乏成人专科医生、缺乏获得全面护理的机会以及成人服务的碎片化。有限的研究侧重于 IEI 患者和照顾者的观点,突出了信息差距、协调不良以及难以适应成人医疗保健结构等问题,这些都是顺利过渡的重要挑战。

总结

IEI 过渡的本地政策和实践差异很大,对结果或患者体验的评估有限。需要进行针对 IEI 的过渡研究,并制定国家和国际共识声明,以指导 IEI 的改善过渡。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ec50/10621636/73e51b5f0523/coaci-23-455-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ec50/10621636/8bab82e542b7/coaci-23-455-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ec50/10621636/73e51b5f0523/coaci-23-455-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ec50/10621636/8bab82e542b7/coaci-23-455-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ec50/10621636/73e51b5f0523/coaci-23-455-g002.jpg

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2
Optimizing the Transition and Transfer of Care in Pediatric Inflammatory Bowel Disease.优化儿科炎症性肠病的过渡和转归管理。
Gastroenterol Clin North Am. 2023 Sep;52(3):629-644. doi: 10.1016/j.gtc.2023.05.004. Epub 2023 Jun 20.
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Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey.
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Front Immunol. 2023 Jul 13;14:1209315. doi: 10.3389/fimmu.2023.1209315. eCollection 2023.
4
Knowledge, Attitudes, and Practices of Allergists/Immunologists Regarding Transition of Care for Primary Immunodeficiency Patients.过敏症专科医生/免疫学家对原发性免疫缺陷患者护理转接的知识、态度和实践
J Clin Immunol. 2023 Apr;43(3):595-603. doi: 10.1007/s10875-022-01415-1. Epub 2022 Dec 1.
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Current Transition Practice for Primary Immunodeficiencies and Autoinflammatory Diseases in Europe: a RITA-ERN Survey.欧洲原发性免疫缺陷和自身炎症性疾病的现行过渡实践:RITA-ERN 调查。
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