应根据个体患者的需求定制囊性纤维化护理的集中式与外展式模型。

Centralised versus outreach models of cystic fibrosis care should be tailored to the needs of the individual patient.

机构信息

Department of Respiratory and Sleep Medicine, Lyell McEwin Hospital, Adelaide, South Australia, Australia.

Department of Respiratory and Sleep Medicine, Royal Adelaide Hospital, Adelaide, South Australia, Australia.

出版信息

Intern Med J. 2020 Feb;50(2):232-235. doi: 10.1111/imj.14724.

DOI:10.1111/imj.14724

PMID:32037704

Abstract

Cystic fibrosis (CF) is a common life-limiting genetic condition. As the disease progresses access to specialist tertiary multi-disciplinary care services may become necessary. For patients living in regional/remote Australia, accessing such services may be a challenge. Here, we describe long-term outcomes for CF patients according to their access to specialist CF centre care in childhood.

摘要

囊性纤维化（CF）是一种常见的、危及生命的遗传疾病。随着疾病的发展，可能需要获得专业的三级多学科护理服务。对于居住在澳大利亚偏远地区的患者来说，获得此类服务可能具有挑战性。在这里，我们根据患者在儿童时期获得专业 CF 中心护理的情况描述 CF 患者的长期预后。