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Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials
JS. Lucas, F. Gahleitner, A. Amorim, M. Boon, P. Brown, C. Constant, S. Cook, S. Crowley, DMS. Destouches, E. Eber, H. Mussaffi, E. Haarman, A. Harris, C. Koerner-Rettberg, CE. Kuehni, P. Latzin, MR. Loebinger, N. Lorent, B. Maitre, A....
Language English Country England, Great Britain
Document type Journal Article
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- Publication type
- Journal Article MeSH
Pulmonary exacerbations are a cause of significant morbidity in patients with primary ciliary dyskinesia (PCD) and are frequently used as an outcome measure in clinical research into chronic lung diseases. So far, there has been no consensus on the definition of pulmonary exacerbations in PCD. 30 multidisciplinary experts and patients developed a consensus definition for children and adults with PCD. Following a systematic review, the panel used a modified Delphi process with a combination of face-to-face meetings and e-surveys to develop a definition that can be used in research settings for children and adults with PCD. A pulmonary exacerbation was defined by the presence of three or more of the following seven items: 1) increased cough, 2) change in sputum volume and/or colour, 3) increased shortness of breath perceived by the patient or parent, 4) decision to start or change antibiotic treatment because of perceived pulmonary symptoms, 5) malaise, tiredness, fatigue or lethargy, 6) new or increased haemoptysis, and 7) temperature >38°C. The consensus panel proposed that the definition should be used for future clinical trials. The definition should be validated and the usability assessed during these studies.
Association des Patients Ayant une Dyskinésie Ciliaire Primitive France
Dept of Paediatric Pneumology University Children's Hospital of Ruhr University Bochum Germany
Dept of Paediatrics University Hospital Gasthuisberg Leuven Belgium
Dept of Pediatric Pulmonology University Medical Faculty Ankara Turkey
Dept of Pediatric Pulmonology VU University Medical Center Amsterdam The Netherlands
Dept of Respiratory Medicine Hannover Medical School Hanover Germany
Dept of Respiratory Medicine University Hospitals Leuven Leuven Belgium
Institute of Social and Preventive Medicine University of Bern Bern Switzerland
Medical School University of Cyprus Nicosia Cyprus
Paediatric Dept of Allergy and Lung Diseases Oslo University Hospital Oslo Norway
PCD Service Dept of Respiratory and Sleep Medicine Royal Children's Hospital Melbourne Australia
Primary Ciliary Dyskinesia Centre Dept of Woman and Child Health University of Padova Padua Italy
References provided by Crossref.org
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- $a Pulmonary exacerbations are a cause of significant morbidity in patients with primary ciliary dyskinesia (PCD) and are frequently used as an outcome measure in clinical research into chronic lung diseases. So far, there has been no consensus on the definition of pulmonary exacerbations in PCD. 30 multidisciplinary experts and patients developed a consensus definition for children and adults with PCD. Following a systematic review, the panel used a modified Delphi process with a combination of face-to-face meetings and e-surveys to develop a definition that can be used in research settings for children and adults with PCD. A pulmonary exacerbation was defined by the presence of three or more of the following seven items: 1) increased cough, 2) change in sputum volume and/or colour, 3) increased shortness of breath perceived by the patient or parent, 4) decision to start or change antibiotic treatment because of perceived pulmonary symptoms, 5) malaise, tiredness, fatigue or lethargy, 6) new or increased haemoptysis, and 7) temperature >38°C. The consensus panel proposed that the definition should be used for future clinical trials. The definition should be validated and the usability assessed during these studies.
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