Clin Exp Otorhinolaryngol.  2023 Nov;16(4):407-412. 10.21053/ceo.2023.01130.

Lack of Correlation of Sinonasal and Otologic Reported Symptoms With Objective Measurements Among Patients With Primary Ciliary Dyskinesia: An International Study

Affiliations
  • 1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
  • 2Graduate School for Cellular and Biomedical Sciences, University of Bern, Bern, Switzerland
  • 3Assistance Publique-Hôpitaux de Paris (AP-HP), Université Paris-Saclay, Service d’ORL, Hôpital Bicêtre, Le Kremlin-Bicêtre, France
  • 4Faculté de Médecine, Université Paris-Saclay, Le Kremlin-Bicêtre, France
  • 5Département de Génétique Médicale, Sorbonne Université, Inserm UMR_S933, Maladies Génétiques D’expression Pédiatrique, Hôpital Armand Trousseau, Paris, France
  • 6Department of Otolaryngology, Nicosia General Hospital, Nicosia, Cyprus
  • 7Department of Otorhinolaryngology, and Primary Ciliary Dyskinesia Unit, La Fe University and Polytechnic Hospital, Valencia, Spain
  • 8Medical School, Valencia University, Valencia, Spain
  • 9Molecular, Cellular and Genomic Biomedicine Group, IIS La Fe, Valencia, Spain
  • 10Department of Paediatrics, University Hospitals Leuven, Leuven, Belgium
  • 11Primary Ciliary Dyskinesia Centre, Southampton Children’s Hospital, Southampton NHS Foundation Trust, Southampton, UK
  • 12Department of Otorhinolaryngology, Head and Neck Surgery, University Hospital of Bern, University of Bern, Bern, Switzerland
  • 13Paediatric Department of Allergy and Lung Diseases, Oslo University Hospital, Oslo, Norway
  • 14Department of Otorhinolaryngology, Head and Neck Surgery, Oslo University Hospital, Oslo, Norway
  • 15Faculty of Medicine, University of Oslo, Oslo, Norway
  • 16Department of Pediatric Pulmonology, Hacettepe University, School of Medicine, Ankara, Turkey
  • 17Department of Pediatric Pulmonology, Marmara University, School of Medicine, Istanbul, Turkey
  • 18Department of Otorhinolaryngology-Head and Neck Surgery, Amsterdam UMC, Amsterdam, The Netherlands
  • 19Department of Otorhinolaryngology, Hacettepe University School of Medicine, Ankara, Turkey
  • 20Department of Pediatric Pulmonology, Emma Children’s Hospital, Amsterdam UMC, Vrije Universiteit, Amsterdam, The Netherlands
  • 21Southampton Children’s Hospital, University of Southampton, Southampton, UK
  • 22Primary Ciliary Dyskinesia Centre, NIHR Respiratory Biomedical Research Centre, University of Southampton, Southampton, UK
  • 23Department of Otorhinolaryngology, Head and Neck Surgery, Charité-Universitätsmedizin Berlin, Berlin, Germany
  • 24Division of Respirology, Department of Pediatrics, University Hospital Liège, Liège, Belgium
  • 25Department of Respiratory Diseases, University Hospitals Leuven, Leuven, Belgium
  • 26Department of Pediatric Pulmonology, Immunology and Critical Care Medicine, Charité-Universitätsmedizin Berlin, Berlin, Germany
  • 27Department of Otorhinolaryngology, University Hospital of Liège, Liège, Belgium
  • 28Biomedical Sciences Department, CEU-Cardenal Herrera University, Castellón, Spain
  • 29Medical School, University of Cyprus, Nicosia, Cyprus
  • 30Pediatric Pulmonology Unit, Hospital ‘Archbishop Makarios III’, Nicosia, Cyprus
  • 31Paediatric Respiratory Medicine, Children’s University Hospital of Bern, University of Bern, Bern, Switzerland


Figure

  • Fig. 1. Patient-reported symptoms and relevant examination findings, and proportion of agreement (n=404). The figure presents proportions of patient or parent-reported symptoms and relevant examination findings in our study. The proportions of reported hearing problems and hearing impairment at audiometry refer to 280 participants with available audiometry results. The lightest shade represents symptoms perceived by the patients but not captured by clinical examinations, and the darkest shade represents underreported problems. On the right side, we present the unweighted Cohen’s kappa, which assesses agreement between patient- or parent-reported symptoms and relevant examination findings (0–0.20=none, 0.21–0.39=poor, 0.40–0.59=weak, 0.60–0.79=moderate, 0.80–0.89=strong, 0.90–1=almost perfect agreement). CI, confidence interval.


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