SARS-CoV-2 infections in people with primary ciliary dyskinesia: neither frequent, nor particularly severe

Pedersen, Eva Sophie Lunde; Goutaki, Myrofora; Harris, Amanda; Dixon, Lucy; Manion, Michele; Rindlisbacher, Bernhard; group, COVID-PCD patient advisory; Lucas, Jane S.; Kuehni, Claudia E.

doi:10.1183/13993003.04548-2020

Cited by 20 publications

(24 citation statements)

References 16 publications

(11 reference statements)

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“…COVID-PCD is a participatory research project where people with PCD have an active role in all stages of research from the design of the study, its content, the piloting, and communication of results. Details about the study methods have been published [ 29 , 30 ]. In short, the COVID-PCD study includes persons of any age from anywhere in the world with a confirmed or suspected diagnosis of PCD.…”

Section: Methodsmentioning

confidence: 99%

“…In May 2020, we set up an international participatory research study, COVID-PCD, to follow people with PCD during the COVID-19 pandemic [ 29 ]. By March 2021, 24 of 640 participants (3.8%) had reported a positive SARS-CoV-2 test but most reported mild or no symptoms [ 30 ]. However, they carefully shielded themselves by staying at home and avoiding public places.…”

Section: Introductionmentioning

confidence: 99%

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

Pedersen

Collaud

Mozún

et al. 2021

Int J Public Health

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Objectives: Primary ciliary dyskinesia (PCD) is a rare genetic disease that causes recurrent respiratory infections. People with PCD may be at high risk of severe COVID-19 and protection against SARS-CoV-2 is therefore important. We studied facemask usage and problems reported in relation with their use among people with PCD.Methods: We used data from COVID-PCD, an international observational cohort study. A questionnaire was e-mailed to participants in October 2020 that asked about facemask usage.Results: In total, 282 participants from 27 countries were included (Median age 32 years; 63% female). In total, 252 (89%) wore facemasks everywhere in public, 13 (5%) wore facemasks in most places, and 17 (6%) did not wear facemasks in public. Half of the participants reported that it was uncomfortable to wear facemasks because of runny nose, cough, or difficulty breathing. Participants less often wore facemasks when there was no national requirement.Conclusion: Most people with PCD wore facemasks despite frequent respiratory problems related to their use. Facemask usage was most frequent in countries with a national requirement emphasizing the importance of nationwide policies mandating facemasks.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Pedersen

Collaud

Mozún

et al. 2021

Int J Public Health

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“…It has also been used as a web-based questionnaire in the COVID-PCD study. [34,35] A potential bias for its use as a postal survey could be selection bias as patients more interested in research or with more severe symptoms might be more prone to participate. However, as the response rate was extremely high, the risk of this bias is low.…”

Section: Limitationsmentioning

confidence: 99%

Respiratory symptoms of Swiss people with primary ciliary dyskinesia

et al. 2022

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BackgroundMostly derived from chart reviews, where symptoms are recorded in a nonstandardised manner, clinical data about primary ciliary dyskinesia (PCD) are inconsistent, which leads to missing and unreliable information. We assessed the prevalence and frequency of respiratory and ear symptoms and studied differences by age and sex among an unselected population of Swiss people with PCD.MethodsWe sent a questionnaire that included items from the FOLLOW-PCD standardised questionnaire to all Swiss PCD registry participants.ResultsWe received questionnaires from 74 out of 86 (86%) invited persons or their caregivers (age range: 3–73 years; median age: 23), including 68% adults (≥18 years) and 51% females. Among participants, 70 (94%) reported chronic nasal symptoms, most frequently runny nose (65%), blocked nose (55%), or anosmia (38%). Ear pain and hearing problems were reported by 58% of the participants. Almost all (99%) reported cough and sputum production. The most common chronic cough complications were gastroesophageal reflux (n=11; 15%), vomiting (n=8; 11%), and urinary incontinence (n=6; 8%). Only 9 participants (12%) reported frequent wheeze, which occurred mainly during infection or exercise, while 49 persons (66%) reported shortness of breath; 9% even at rest or during daily activities. Older patients reported more frequent nasal symptoms and shortness of breath. We found no difference by sex or ultrastructural ciliary defect.ConclusionThis is the first study that describes patient-reported PCD symptoms. The consistent collection of standardised clinical data will allow us to better characterise the phenotypic variability of the disease and study disease course and prognosis.

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“…COVID-PCD is a participatory research project where people with PCD play an active role at all stages of research, including study design and content, piloting, and communication of results. Details about study methods and initial results have been published previously [26,27]. In summary, COVID-PCD includes people of any age from any country with suspected or confirmed PCD.…”

Section: Study Design and Inclusion Criteriamentioning

confidence: 99%

“…To study the incidence and severity of COVID-19 in people with PCD, we set up a participatory study, the COVID-PCD, in collaboration with PCD support groups from all over the world [26]. First results from the study showed a low infection rate and mostly mild COVID-19 disease [27]. People with PCD were strongly recommended to get vaccinated against SARS-CoV-2; however, to date there is no information about vaccination willingness, vaccination uptake, and side effects among people with PCD.…”

Section: Introductionmentioning

confidence: 99%

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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SARS-CoV-2 infections in people with primary ciliary dyskinesia: neither frequent, nor particularly severe

Cited by 20 publications

References 16 publications

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

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

Respiratory symptoms of Swiss people with primary ciliary dyskinesia

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

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