Pulmonary exacerbations in patients with primary ciliary dyskinesia : an expert consensus definition for use in clinical trials
Lucas, Jane S. (University Hospital Southampton NHS Foundation Trust (Regne Unit))
Gahleitner, Florian (University of Southampton)
Amorim, Adelina (Porto University)
Boon, Mieke (University Hospitals Gasthuisberg (Leuven, Bélgica))
Brown, Philippa (PCD Family Support Group)
Constant, Carolina (Centro Hospitalar Lisboa Norte)
Cook, Simon (PCD Family Support Group)
Crowley, Suzanne (Oslo University Hospital (Oslo, Noruega))
Destouches, Damien M. S. (Association des Patients Ayant une Dyskinésie Ciliaire Primitive)
Eber, Ernst (Medical University of Graz, Graz, Austria)
Mussaffi, Huda (Tel Aviv University)
Haarman, Eric (Amsterdam UMC. University Medical Center)
Harris, Amanda (University of Southampton)
Koerner-Rettberg, Cordula (University Children's Hospital of Ruhr University)
Kuehni, Claudia E. (University of Bern)
Latzin, Philipp (Bern University Hospital)
Loebinger, Michael R. (Imperial College London)
Lorent, Natalie (University Hospitals Leuven (Bèlgica))
Maitre, Bernard (Université Paris Est-Créteil)
Moreno Galdó, Antonio (Hospital Universitari Vall d'Hebron)
Nielsen, Kim G. (Copenhagen University Hospital)
Özçelik, Uğur (University Medical Faculty (Turquia))
Philipsen, Lue Katrine Drasbæk (Copenhagen University Hospital)
Pohunek, Petr (Charles University. Faculty of Medicine in Hradec Králové)
Polverino, Eva (Hospital Universitari Vall d'Hebron. Institut de Recerca)
Rademacher, Jessica (Hannover Medical School)
Robinson, Phil (Royal Children's Hospital)
Snijders, Deborah (University of Padova)
Yiallouros, Panayiotis (niversity of Cyprus)
Carr, Siobhán B. (Imperial College and Royal Brompton Hospital)
Universitat Autònoma de Barcelona

Data:	2019
Resum:	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. A consensus definition for pulmonary exacerbations in children and adults with PCD for use in clinical trials.
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Publicat a:	ERJ Open Research, Vol. 5 (february 2019) , ISSN 2312-0541

DOI: 10.1183/23120541.00147-2018
PMID: 30723730

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