罕见护理-跨部门护理协调。

IF 1.6 4区 医学 Q3 GENETICS & HEREDITY
Gareth Baynam, Joanne Siffleet, Theresa Abbott, Sue Baker, Daniella Dye, Amanda Newell, Stephanie Broley, Kaila Stevens
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引用次数: 0

摘要

罕见病和未确诊疾病总体上是全球卫生重点问题,由于其低患病率、累积频率和复杂的护理要求,给卫生保健系统带来了明显的挑战。罕见和未确诊疾病对儿童及其家庭的影响超出了身心健康,影响到他们生活的方方面面。本文概述了一种创新的护理模式的发展,强调跨部门护理协调,作为一种提高患有罕见和未确诊疾病的西澳大利亚儿童的健康和福祉的方法。所获得的详细见解将支持和指导医疗保健专业人员创建服务,改善罕见疾病和未确诊疾病患者及其家庭的结果。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Rare Care - Cross-Sector Care Coordination.

Rare and undiagnosed diseases collectively represent a global health priority, presenting distinct challenges for healthcare systems due to their low prevalence, cumulative frequency, and complex care requirements. The impact of rare and undiagnosed diseases on children and their families extends beyond physical and mental health, affecting every aspect of their lives. This paper outlines the development of an innovative Model of Care that emphasises cross-sector care coordination as an approach to enhance the health and well-being of Western Australian children living with rare and undiagnosed diseases. Detailing insights gained will support and guide healthcare professionals to create services that improve outcomes for people living with rare diseases and undiagnosed diseases and their families.

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来源期刊
CiteScore
4.10
自引率
0.00%
发文量
193
审稿时长
66 days
期刊介绍: The European Journal of Medical Genetics (EJMG) is a peer-reviewed journal that publishes articles in English on various aspects of human and medical genetics and of the genetics of experimental models. Original clinical and experimental research articles, short clinical reports, review articles and letters to the editor are welcome on topics such as : • Dysmorphology and syndrome delineation • Molecular genetics and molecular cytogenetics of inherited disorders • Clinical applications of genomics and nextgen sequencing technologies • Syndromal cancer genetics • Behavioral genetics • Community genetics • Fetal pathology and prenatal diagnosis • Genetic counseling.
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