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欧洲呼吸学会/欧洲囊性纤维化学会成人囊性纤维化护理工作组报告。

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis.

机构信息

School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK

Dept of Thoracic Medicine, The Prince Charles Hospital and QIMR Berghofer Medical Research Institute, Brisbane, Australia.

出版信息

Eur Respir J. 2016 Feb;47(2):420-8. doi: 10.1183/13993003.00592-2015. Epub 2015 Oct 9.

Abstract

The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major life-threatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme.

摘要

囊性纤维化患者的生存率提高导致越来越多的患者达到成年期。这种趋势在未来几十年可能会持续下去,这表明需要增加具有囊性纤维化成年患者管理专业知识的中心数量。这些中心应该能够提供多学科的护理,以解决疾病的复杂性,以及解决患者及其家属的心理负担。还需要关注器官移植和生命末期管理。成人囊性纤维化患者的肺部疾病是大多数临床护理需求的驱动因素,严重的危及生命的并发症,如呼吸道感染、呼吸衰竭、气胸和咯血,以及肺移植的管理,都需要经过培训的呼吸内科医生的专业知识。因此,专家组强烈建议,多学科成人团队的医学领导权应赋予在囊性纤维化管理方面受过充分培训的呼吸内科医生。该工作组建议为成人呼吸医学的学员实施核心课程,并选择和认证提供符合 HERMES 计划标准的研究生培训的培训中心。

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