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.
- Elborn, J. S.; Bell, S. C.; Madge, S. L.; Burgel, P. R.; Castellani, C.; Conway, S.; De Rijcke, K.; Dembski, B.; Drevinek, P.; Heijerman, H. G.; Innes, J. A.; Lindblad, A.; Marshall, B.; Olesen, H. V.; Reimann, A. L.; Sole, A.; Viviani, L.; Wagner, T. O.; Welte, T.; Blasi, F.
Keywords
- Adult
- Advisory Committees
- Cystic Fibrosis/psychology/*therapy
- Disease Management
- Europe
- Health Planning
- *Health Services Needs and Demand
- Humans
- Lung Transplantation
- Patient Compliance
- Pulmonary Medicine/*education/manpower/organization & administration
- Social Support
- Societies, Medical
- *Terminal Care
- Transition to Adult Care/organization & administration