Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus
Background Recurrent infections of the nose, sinuses and ears are common problems for people with primary ciliary dyskinesia. While pulmonary exacerbations in primary ciliary dyskinesia are defined, there is no definition for ear-nose-throat exacerbations, a potential outcome for research and clinic...
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| Format: | Article |
| Language: | English |
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European Respiratory Society
2024-12-01
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| Series: | ERJ Open Research |
| Online Access: | http://openres.ersjournals.com/content/10/6/00218-2024.full |
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| author | Myrofora Goutaki Yin Ting Lam Andreas Anagiotos Miguel Armengot Andrea Burgess Raewyn Campbell Mathilde Carlier Nathalie Caversaccio Neil K. Chadha Berat Demir Sinan Ahmed D. Dheyauldeen Onder Gunaydin Amanda Harris Isolde Hayn Deniz Inal-Ince Eric Levi Trini Lopez Fernandez Jane S. Lucas Bernard Maitre Anne-Lise M.L. Poirrier Lynne Schofield Kazuhiko Takeuchi Christine van Gogh Nikolaus E. Wolter Jean-François Papon |
| author_facet | Myrofora Goutaki Yin Ting Lam Andreas Anagiotos Miguel Armengot Andrea Burgess Raewyn Campbell Mathilde Carlier Nathalie Caversaccio Neil K. Chadha Berat Demir Sinan Ahmed D. Dheyauldeen Onder Gunaydin Amanda Harris Isolde Hayn Deniz Inal-Ince Eric Levi Trini Lopez Fernandez Jane S. Lucas Bernard Maitre Anne-Lise M.L. Poirrier Lynne Schofield Kazuhiko Takeuchi Christine van Gogh Nikolaus E. Wolter Jean-François Papon |
| author_sort | Myrofora Goutaki |
| collection | DOAJ |
| description | Background
Recurrent infections of the nose, sinuses and ears are common problems for people with primary ciliary dyskinesia. While pulmonary exacerbations in primary ciliary dyskinesia are defined, there is no definition for ear-nose-throat exacerbations, a potential outcome for research and clinical trials.
Methods
We set up an expert panel of 24 ear-nose-throat specialists, respiratory physicians, other healthcare professionals and patients to develop consensus definitions of sinonasal and otological exacerbations in children and adults with primary ciliary dyskinesia for research settings. We reviewed the literature and used a modified Delphi approach with four electronic surveys.
Results
Definitions for both sinonasal and otological exacerbations are based on a combination of major and minor criteria, requiring three major or two major and at least two 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 or sensitivity in the sinus regions and 3) mucopurulent discharge on examination. Minor criteria include reported symptoms, examination signs, doctor's decision to treat and improvement after at least 14 days. Major criteria for the otological exacerbation are 1) reported acute ear pain or sensitivity, 2) reported acute ear discharge, 3) ear discharge on examination and 4) signs of otitis media in otoscopy. Minor criteria are reported acute hearing problems, signs of acute complication, and doctor's decision to treat.
Conclusion
These definitions might offer a useful outcome measure for primary ciliary dyskinesia research in different settings. They should be validated in future studies and trials together with other potential outcomes, to assess their usability. |
| format | Article |
| id | doaj-art-f73b06efd45044d2b480bff07cbeb8cb |
| institution | Kabale University |
| issn | 2312-0541 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | European Respiratory Society |
| record_format | Article |
| series | ERJ Open Research |
| spelling | doaj-art-f73b06efd45044d2b480bff07cbeb8cb2025-01-14T09:50:22ZengEuropean Respiratory SocietyERJ Open Research2312-05412024-12-0110610.1183/23120541.00218-202400218-2024Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensusMyrofora Goutaki0Yin Ting Lam1Andreas Anagiotos2Miguel Armengot3Andrea Burgess4Raewyn Campbell5Mathilde Carlier6Nathalie Caversaccio7Neil K. Chadha8Berat Demir9Sinan Ahmed D. Dheyauldeen10Onder Gunaydin11Amanda Harris12Isolde Hayn13Deniz Inal-Ince14Eric Levi15Trini Lopez Fernandez16Jane S. Lucas17Bernard Maitre18Anne-Lise M.L. Poirrier19Lynne Schofield20Kazuhiko Takeuchi21Christine van Gogh22Nikolaus E. Wolter23Jean-François Papon24 Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Department of Otorhinolaryngology, Nicosia General Hospital, Nicosia, Cyprus Department of Otorhinolaryngology, and Primary Ciliary Dyskinesia Unit, La Fe University and Polytechnic Hospital, Valencia, Spain Primary Ciliary Dyskinesia Centre, Southampton Children's Hospital, Southampton NHS Foundation Trust, Southampton, UK Department of Otolaryngology, Royal Prince Alfred Hospital, Sydney, NSW, Australia Association ADCP, Saint-Étienne, France Department of Otorhinolaryngology, Head and Neck Surgery, University Hospital of Bern, University of Bern, Bern, Switzerland Division of Pediatric Otolaryngology-Head and Neck Surgery, Department of Surgery, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada Department of Otorhinolaryngology-Head and Neck Surgery, Pendik Training and Research Hospital, Marmara University Medical Faculty, Istanbul, Turkey Department of Otorhinolaryngology, Head and Neck Surgery, Oslo University Hospital, Oslo, Norway Department of Otorhinolaryngology, Hacettepe University, School of Medicine, Ankara, Turkey Primary Ciliary Dyskinesia Centre, Southampton Children's Hospital, University Hospital of Southampton, Southampton, UK Department of Otorhinolaryngology, Head and Neck Surgery, Charité-Universitätsmedizin Berlin, Berlin, Germany Faculty of Physical Therapy and Rehabilitation, Hacettepe University, Ankara, Turkey Department of Otolaryngology, The Royal Children, Hospital Melbourne, Melbourne, VIC, Australia Asociación Española de Pacientes con Discinesia Ciliar Primaria, Santo Ángel, Spain Primary Ciliary Dyskinesia Centre, Southampton Children's Hospital, University Hospital of Southampton, Southampton, UK Service de Pneumologie, Centre hospitalier intercommunal de Créteil, Unité de Pneumologie, GH Mondor, IMRB U 955, Equipe 8, Université Paris Est Créteil, Créteil, France Department of Otorhinolaryngology, University Hospital Liège, Liège, Belgium School of Medicine and Population Health, University of Sheffield, Sheffield, UK Department of Otorhinolaryngology-Head and Neck Surgery, Mie University Graduate School of Medicine, Tsu, Mie, Japan Department of Otorhinolaryngology-Head and Neck Surgery, Amsterdam UMC, Amsterdam, The Netherlands Department of Otolaryngology-Head and Neck Surgery, Hospital for Sick Children, University of Toronto, Toronto, ON, Canada Assistance Publique-Hôpitaux de Paris, Université Paris-Saclay, Hôpital Bicêtre, Service d'ORL, Le Kremlin-Bicêtre, France Background Recurrent infections of the nose, sinuses and ears are common problems for people with primary ciliary dyskinesia. While pulmonary exacerbations in primary ciliary dyskinesia are defined, there is no definition for ear-nose-throat exacerbations, a potential outcome for research and clinical trials. Methods We set up an expert panel of 24 ear-nose-throat specialists, respiratory physicians, other healthcare professionals and patients to develop consensus definitions of sinonasal and otological exacerbations in children and adults with primary ciliary dyskinesia for research settings. We reviewed the literature and used a modified Delphi approach with four electronic surveys. Results Definitions for both sinonasal and otological exacerbations are based on a combination of major and minor criteria, requiring three major or two major and at least two 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 or sensitivity in the sinus regions and 3) mucopurulent discharge on examination. Minor criteria include reported symptoms, examination signs, doctor's decision to treat and improvement after at least 14 days. Major criteria for the otological exacerbation are 1) reported acute ear pain or sensitivity, 2) reported acute ear discharge, 3) ear discharge on examination and 4) signs of otitis media in otoscopy. Minor criteria are reported acute hearing problems, signs of acute complication, and doctor's decision to treat. Conclusion These definitions might offer a useful outcome measure for primary ciliary dyskinesia research in different settings. They should be validated in future studies and trials together with other potential outcomes, to assess their usability.http://openres.ersjournals.com/content/10/6/00218-2024.full |
| spellingShingle | Myrofora Goutaki Yin Ting Lam Andreas Anagiotos Miguel Armengot Andrea Burgess Raewyn Campbell Mathilde Carlier Nathalie Caversaccio Neil K. Chadha Berat Demir Sinan Ahmed D. Dheyauldeen Onder Gunaydin Amanda Harris Isolde Hayn Deniz Inal-Ince Eric Levi Trini Lopez Fernandez Jane S. Lucas Bernard Maitre Anne-Lise M.L. Poirrier Lynne Schofield Kazuhiko Takeuchi Christine van Gogh Nikolaus E. Wolter Jean-François Papon Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus ERJ Open Research |
| title | Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus |
| title_full | Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus |
| title_fullStr | Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus |
| title_full_unstemmed | Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus |
| title_short | Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus |
| title_sort | definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia an expert consensus |
| url | http://openres.ersjournals.com/content/10/6/00218-2024.full |
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