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

被引:85
作者
Elborn, J. Stuart [1 ]
Bell, Scott C. [2 ,3 ]
Madge, Susan L. [4 ]
Burgel, Pierre-Regis [5 ,6 ]
Castellani, Carlo [7 ]
Conway, Steven [8 ,9 ]
De Rijcke, Karleen [10 ]
Dembski, Birgit [11 ]
Drevinek, Pavel [12 ,13 ]
Heijerman, Harry G. M. [14 ]
Innes, J. Alistair [15 ]
Lindblad, Anders [16 ]
Marshall, Bruce [17 ]
Olesen, Hanne V. [18 ]
Reimann, Andreas L. [19 ]
Sole, Ampara [20 ]
Viviani, Laura [21 ]
Wagner, Thomas O. F. [22 ]
Welte, Tobias [23 ]
Blasi, Francesco [24 ]
机构
[1] Queens Univ Belfast, Sch Med Dent & Biomed Sci, Room G-16,Hlth Sci Bldg,97 Lisburn Rd, Belfast BT9 7AE, Antrim, North Ireland
[2] Prince Charles Hosp, Dept Thorac Med, Brisbane, Qld, Australia
[3] QIMR Berghofer Med Res Inst, Brisbane, Qld, Australia
[4] Royal Brompton Hosp, Dept Resp Med, London, England
[5] Cochin Hosp, AP HP, Dept Resp Med, Paris, France
[6] Univ Paris 05, Sorbonne Paris Cite, Paris, France
[7] Azienda Osped Univ Integrata, Cyst Fibrosis Ctr, Verona, Italy
[8] Leeds Teaching Hosp Trust, Paediat CF Unit, Leeds, W Yorkshire, England
[9] Leeds Teaching Hosp Trust, Adult CF Unit, Leeds, W Yorkshire, England
[10] Cyst Fibrosis Europe, Brussels, Belgium
[11] Mukoviszidose eV, Berlin, Germany
[12] Charles Univ Prague, Dept Med Microbiol, Motol Univ Hosp, Prague, Czech Republic
[13] Charles Univ Prague, Fac Med 2, Prague, Czech Republic
[14] Haga Teaching Hosp, Dept Pulmonol & Cyst Fibrosis, The Hague, Netherlands
[15] Western Gen Hosp, Scottish Adult Cyst Fibrosis Serv, Edinburgh, Midlothian, Scotland
[16] Sahlgrens Univ Hosp, Dept Paediat, Queen Silvia Childrens Hosp, Gothenburg, Sweden
[17] Cyst Fibrosis Fdn, Bethesda, MD USA
[18] Aarhus Univ Hosp, CF Ctr, Aarhus, Denmark
[19] Mukoviszidose Inst gGmbH, Bonn, Germany
[20] Univ Hosp FE, Lung Transplant & Adult Cyst Fibrosis, Dept Pneumol, Valencia, Spain
[21] Univ Milan, Dipartimento Sci Clin & Comunita, Milan, Italy
[22] Goethe Univ Frankfurt, Christiane Herzog CF Ctr, Dept Resp Dis, Frankfurt, Germany
[23] Hannover Med Sch, Dept Resp Med, Hannover, Germany
[24] Univ Milan, Dept Pathophysiol & Transplantat, IRCCS Fdn Ca Granda, Via Francesco Sforza 35, IL-20122 Milan, Italy
关键词
RESISTANT STAPHYLOCOCCUS-AUREUS; LUNG TRANSPLANTATION; LIFE CARE; ADHERENCE; STANDARDS; TRANSITION; CHILDREN; SURVIVAL; TRENDS; MANAGEMENT;
D O I
10.1183/13993003.00592-2015
中图分类号
R56 [呼吸系及胸部疾病];
学科分类号
摘要
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.
引用
收藏
页码:420 / 428
页数:9
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