Consensus definition of sinonasal and otologic exacerbation in patients with primary ciliary dyskinesia

<bold>Background:</bold> Recurrent infections of the nose, sinuses, and ears are common problems of people with primary ciliary dyskinesia (PCD). While pulmonary exacerbations in PCD are defined, there is no definition for Ear-Nose-Throat (ENT) exacerbations, a potential outcome for research and clinical trials. <bold>Methods:</bold> We set up an expert panel of 24 ENT specialists, patients, respiratory physicians, and other healthcare professionals, to develop consensus definitions of sinonasal and otologic exacerbations in children and adults with PCD for research settings. We reviewed the literature and used a modified Delphi approach with 4 electronic surveys. <bold>Results:</bold> Both definitions are based on a combination of major and minor criteria, requiring 3 major or 2 major and at least 2 minor criteria each. Major criteria for a sinonasal exacerbation are: 1) reported acute increase in nasal discharge or change in colour; 2) reported acute pain/sensitivity in the sinus regions; 3) mucopurulent discharge on examination. Minor criteria include: reported symptoms; examination signs; doctor´s decision to treat; improvement after at least 14-days. Major criteria for the otologic exacerbation are: 1) reported acute ear pain/sensitivity, 2) reported acute ear discharge, 3) ear discharge on examination, 4) signs of otitis media in otoscopy. Minor criteria are: reported acute hearing problems; signs of acute complication; doctor´s decision to treat. <bold>Conclusion:</bold> These definitions might offer a useful outcome measure for PCD research in different settings. They should be validated in future studies and trials together with other potential outcomes, to assess their usability. <bold>Funding:</bold> SNF PZ00P3_185923, BEAT-PCD

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Published
2024-09-14
DOI
https://doi.org/10.1183/13993003.congress-2024.oa1989
Primary Topic
Sinusitis and nasal conditions
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article
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article

Consensus definition of sinonasal and otologic exacerbation in patients with primary ciliary dyskinesia

Raewyn Gay Campbell, Eric Levi, Andreas Anagiotos, Lynne Schofield et al.
Sinusitis and nasal conditions
article

Consensus definition of sinonasal and otologic exacerbation in patients with primary ciliary dyskinesia

Raewyn Gay Campbell, Eric Levi, Andreas Anagiotos, Lynne Schofield, Yin Ting Lam, Myrofora Goutaki, Jane S. Lucas, Kazuhiko Takeuchi, Anne‐Lise Poirrier, Trini Lopez Fernandez, Natalie Caversaccio, Bernard Maître, A. E. Burgess, Rıza Önder Günaydın, Berat Demir, Amanda Harris, Nikolaus E. Wolter, Deni̇z İnal İnce, Christine van Gogh, Jean‐François Papon, Neil K. Chadha, Miguel Armengot‐Carceller, Isolde Hayn, Mathilde Carlier, Sinan Ahmed D. Dheyauldeen
article en

Abstract

<bold>Background:</bold> Recurrent infections of the nose, sinuses, and ears are common problems of people with primary ciliary dyskinesia (PCD). While pulmonary exacerbations in PCD are defined, there is no definition for Ear-Nose-Throat (ENT) exacerbations, a potential outcome for research and clinical trials. <bold>Methods:</bold> We set up an expert panel of 24 ENT specialists, patients, respiratory physicians, and other healthcare professionals, to develop consensus definitions of sinonasal and otologic exacerbations in children and adults with PCD for research settings. We reviewed the literature and used a modified Delphi approach with 4 electronic surveys. <bold>Results:</bold> Both definitions are based on a combination of major and minor criteria, requiring 3 major or 2 major and at least 2 minor criteria each. Major criteria for a sinonasal exacerbation are: 1) reported acute increase in nasal discharge or change in colour; 2) reported acute pain/sensitivity in the sinus regions; 3) mucopurulent discharge on examination. Minor criteria include: reported symptoms; examination signs; doctor´s decision to treat; improvement after at least 14-days. Major criteria for the otologic exacerbation are: 1) reported acute ear pain/sensitivity, 2) reported acute ear discharge, 3) ear discharge on examination, 4) signs of otitis media in otoscopy. Minor criteria are: reported acute hearing problems; signs of acute complication; doctor´s decision to treat. <bold>Conclusion:</bold> These definitions might offer a useful outcome measure for PCD research in different settings. They should be validated in future studies and trials together with other potential outcomes, to assess their usability. <bold>Funding:</bold> SNF PZ00P3_185923, BEAT-PCD

University of Bern (CH), Oslo University Hospital (NO), Royal Children's Hospital (AU), University of Liège (BE), Mie University (JP), Université Paris-Est Créteil (FR), Université Paris-Saclay (FR), Leeds Teaching Hospitals NHS Trust (GB), Royal Prince Alfred Hospital (AU), Nicosia General Hospital (CY), University Hospital of Bern (CH), Hospital for Sick Children (CA), Hospital Universitari i Politècnic La Fe (ES), Assistance Publique – Hôpitaux de Paris (FR), Amsterdam Neuroscience (NL), ADIR Association (FR), NIHR Southampton Biomedical Research Centre (GB), Southampton Children's Hospital (GB), University Children’s Hospital Bern (CH), Asociación Española de Urología (ES), Institute of Social and Preventive Medicine (CH), BC Children's Hospital (CA), Hôpital Intercommunal de Créteil (FR), Institut Mondor de Recherche Biomédicale (FR), Bicêtre Hospital (FR), Hacettepe University (TR), Marmara University (TR), Charité - Universitätsmedizin Berlin (DE)
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