Abstract

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.

Highlights

  • Vaccination against coronavirus disease 2019 (COVID-19) has proven effective in preventing transmission of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) [1,2] with most countries vaccinating against COVID-19 [3]

  • We described the demographics of the study participants, vaccination uptake, vaccination willingness and hesitancy, reasons for and against getting vaccinated, side effects, changes in social behaviour using number and proportion for categorical variables, and mean and standard deviation (SD) or median and interquartile range for continuous variables

  • Participants who completed the special questionnaire on vaccinations were slightly older, more often female, and more often from European countries than those who did not complete it (Supplementary Table S2)

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Summary

Introduction

Vaccination against coronavirus disease 2019 (COVID-19) has proven effective in preventing transmission of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) [1,2] with most countries vaccinating against COVID-19 [3]. Several vaccines against COVID-19 have been approved [4,5,6], the first of which were administered at the end of 2020. Priority was given to people considered at high risk of severe COVID-19, such as the elderly and people with chronic diseases [7]. Vaccination willingness has generally been high in Europe, but an important proportion of the general population in several countries still hesitates to get vaccinated [8,9,10].

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