Facemask Usage Among People With Primary Ciliary Dyskinesia During the COVID-19 Pandemic: A Participatory Project

Pedersen, Eva Sophie Lunde; Collaud, Eugenie; Mozún, Rebeca; Lucas, Jane S.; group, COVID-PCD patient advisory; Goutaki, Myrofora; Kuehni, Claudia E.; Rindlisbacher, Bernhard; Kruljac, Catherine; Copeland, Fiona; Silberschmidt, Hansruedi; Dexter, Katie; Dixon, Lucy; Michelle, Manion; Bellu, Sara; Susanne, Grieder

doi:10.3389/ijph.2021.1604277

Cited by 14 publications

(14 citation statements)

References 37 publications

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“…In our study, we did not ask whether participants kept social distancing when going out or seeing friends and family, but around 20% said that they did shake hands with people more often after getting vaccinated. This is in contrast to previous studies that found that people with PCD are very careful in protecting themselves against COVID-19 by avoiding public places and always wearing facemasks [44].…”

Section: Strengths and Limitationscontrasting

confidence: 93%

COVID-19 Vaccinations: Perceptions and Behaviours in People with Primary Ciliary Dyskinesia

et al. 2021

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Primary ciliary dyskinesia (PCD) is a rare genetic disease that causes recurrent respiratory infections. People with PCD may be at higher risk of severe coronavirus disease 2019 (COVID-19), and therefore vaccination against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is important. We studied vaccination willingness, speed of vaccination uptake, side effects, and changes in social contact behaviour after vaccination in people with PCD. We used data from COVID-PCD, an international participatory cohort study. A COVID-19 vaccination questionnaire was emailed to participants in May 2021 and 423 participants from 31 countries replied (median age: 30 years, range 1–85 years; 261 (62%) female). Vaccination uptake and willingness were high, with 273 of 287 adults (96%) being vaccinated or willing to be in June 2021; only 4% were hesitant. The most common reason for hesitancy was fear of side effects, reported by 88%. Mild side effects were common, but no participant reported severe side effects. Half of the participants changed their social behaviour after vaccination by seeing friends and family more often. The high vaccination willingness in the study population might reflect the extraordinary effort taken by PCD support groups to inform people about COVID-19 vaccination. Clear and specific information and involvement of representatives is important for high vaccine uptake.

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Section: Strengths and Limitationscontrasting

confidence: 93%

COVID-19 Vaccinations: Perceptions and Behaviours in People with Primary Ciliary Dyskinesia

et al. 2021

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“…Because recruitment started in early 2020, these results are possibly affected by the COVID-19 pandemic. Based on anecdotal evidence, patients with PCD experienced fewer infections due to careful shielding, which possibly led to decreased prevalence of ear problems . As the cohort continues to be followed up longitudinally, it will be important to study possible changes in symptoms and signs coinciding with relaxing pandemic measures.…”

Section: Discussionmentioning

confidence: 99%

Characteristics of Otologic Disease Among Patients With Primary Ciliary Dyskinesia

Goutaki

Lam

Alexandru

et al. 2023

JAMA Otolaryngol Head Neck Surg

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ImportanceOtologic disease is common among people with primary ciliary dyskinesia (PCD), yet little is known about its spectrum and severity.ObjectiveTo characterize otologic disease among participants with PCD using data from the Ear-Nose-Throat Prospective International Cohort.Design, Setting, and ParticipantsThis cross-sectional analysis of baseline cohort data from February 2020 through July 2022 included participants from 12 specialized centers in 10 countries. Children and adults with PCD diagnoses; routine ear, nose, and throat examinations; and completed symptom questionnaires at the same visit or within 2 weeks were prospectively included.ExposuresPotential risk factors associated with increased risk of ear disease.Main Outcomes and MeasuresThe prevalence and characteristics of patient-reported otologic symptoms and findings from otologic examinations, including potential factors associated with increased risk of ear inflammation and hearing impairment.ResultsA total of 397 individuals were eligible to participate in this study (median [range] age, 15.2 [0.2-72.4] years; 186 (47%) female). Of the included participants, 204 (51%) reported ear pain, 110 (28%) reported ear discharge, and 183 (46%) reported hearing problems. Adults reported ear pain and hearing problems more frequently when compared with children. Otitis media with effusion—usually bilateral—was the most common otoscopic finding among 121 of 384 (32%) participants. Retracted tympanic membrane and tympanic sclerosis were more commonly seen among adults. Tympanometry was performed for 216 participants and showed pathologic type B results for 114 (53%). Audiometry was performed for 273 participants and showed hearing impairment in at least 1 ear, most commonly mild. Season of visit was the strongest risk factor for problems associated with ear inflammation (autumn vs spring: odds ratio, 2.40; 95% CI, 1.51-3.81) and age 30 years and older for hearing impairment (41-50 years vs ≤10 years: odds ratio, 3.33; 95% CI, 1.12-9.91).Conclusion and RelevanceIn this cross-sectional study, many people with PCD experienced ear problems, yet frequency varied, highlighting disease expression differences and possible clinical phenotypes. Understanding differences in otologic disease expression and progression during lifetime may inform clinical decisions about follow-up and medical care. Multidisciplinary PCD management should be recommended, including regular otologic assessments for all ages, even without specific complaints.

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“…Comparing incidence rate of reported SARS-CoV-2 in our study with wholecountry incidence rates should however be done with caution due to differences in case definitions and methods for calculating follow-up time. The low incidence in our study population may be because people with PCD exhibited particular caution by reducing social contact, wearing masks in public, and getting vaccinated against COVID-19 18,23,24 . The extraordinary effort from PCD support groups taken to inform and encourage people with PCD throughout the pandemic may also have contributed to the low incidence.…”

Section: Interpretation and Clinical Implicationsmentioning

confidence: 81%

“…In December 2021 after 80 weeks of follow-up, we reduced the frequency of follow-up questionnaires to once every four weeks. Participants also received two extra questionnaires which studied specific questions in detail; one focused on use of face masks and one on COVID-19 is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) vaccinations 23,24 . The present paper includes all study participants who completed the baseline questionnaire.…”

Section: Study Procedures and Questionnairesmentioning

confidence: 99%

Incidence and severity of SARS-CoV-2 infections in people with primary ciliary dyskinesia

Pedersen

Schreck

Goutaki

et al. 2022

Preprint

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Importance: Early in the COVID-19 pandemic, chronic respiratory disease was considered a risk factor for severe COVID-19 disease. Studies have confirmed a higher risk of intensive care unit admission and mortality in people with chronic pulmonary obstructive disease and cystic fibrosis, but there is little data in people with primary ciliary dyskinesia (PCD). Objective: To study incidence of SARS-CoV-2 and its risk factors in people with PCD from May 2020 to May 2022. We also describe the severity of COVID-19 symptoms in this population and factors associated with severity. Design, setting, and participants: We used data from COVID-PCD, an international participatory cohort study following people with PCD through the COVID-19 pandemic. The study is based on self-reported weekly online questionnaires, available in five languages, adapted to children, adolescents, and adults. COVID-PCD invites people with PCD of any age to participate. Exposures: SARS-CoV-2 Main Outcomes: Incidence of reported positive test of SARS-CoV-2 and reported severity of symptoms. Results: By May 2022, 728 people with PCD participated (40% male, median age 27 years; range 0-85). The median weeks of follow-up was 60 (range 1-100). Eighty-seven (12%) reported a SARS-CoV-2 infection at baseline or during follow-up and 62 people reported an incident SARS-CoV-2 infection during 716 person-years of follow-up (incidence rate 9 per 100 person years; 95%CI 7-11). Using Poisson regression, we found that age above 14 years was associated with lower risk of infection (IRR 0.42, 95%CI 0.21-0.85) but the strongest predictors were exposure to Delta (IRR 4.52, 95%CI 1.92-10.6) and Omicron variants (IRR 13.3, 95%CI 5.2-33.8) compared to the original strain. Severity of disease was mainly mild; 12 (14%) were asymptomatic and 75 (86%) had symptoms among whom 4 were hospitalized. None needed intensive care and nobody died. Using Poisson regression, we found that comorbidity (IRR 1.93, 95%CI 1.40-2.64) and being infected during the period when the Delta variant was predominant (IRR 1.43, 95%CI 1.07-1.92) were associated with more reported symptoms. Conclusion and Relevance: People with PCD do not seem to have a higher incidence of SARS-CoV-2 infections nor higher risk of severe COVID-19 disease than people from the general population.

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Facemask Usage Among People With Primary Ciliary Dyskinesia During the COVID-19 Pandemic: A Participatory Project

Cited by 14 publications

References 37 publications

COVID-19 Vaccinations: Perceptions and Behaviours in People with Primary Ciliary Dyskinesia

COVID-19 Vaccinations: Perceptions and Behaviours in People with Primary Ciliary Dyskinesia

Characteristics of Otologic Disease Among Patients With Primary Ciliary Dyskinesia

Incidence and severity of SARS-CoV-2 infections in people with primary ciliary dyskinesia

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