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

  1. Eva S. L. Pedersen
  2. Maria Christina Mallet
  3. Yin Ting Lam
  4. Sara Bellu
  5. Isabelle Cizeau
  6. Fiona Copeland
  7. Trini Lopez Fernandez
  8. Michele Manion
  9. Amanda L. Harris
  10. Jane S. Lucas
  11. Francesca Santamaria
  12. Myrofora Goutaki
  13. Claudia E. Kuehni
  14. COVID-PCD Patient Advisory Group

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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.

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  1. Version published to 10.3390/vaccines9121496
  2. ScreenIT

    SciScore for 10.1101/2021.11.08.21266047: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    EthicsIRB: The Cantonal Ethics Committee of Bern approved the study (Study ID: 2020-00830).
    Consent: Informed consent to participate is provided online at the time of registration into the study.
    Sex as a biological variablenot detected.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    All data were entered in a Research Electronic Data Capture (REDCap) database developed at Vanderbilt University (www.project-redcap.org) (29), which is securely hosted by the Swiss medical registries and data linkage centre (SwissRDL) at the University of Bern, Switzerland. Information about COVID-19 vaccinations: The special questionnaire on COVID-19 vaccinations asked whether participants had already been vaccinated and if yes which vaccine they received (supplementary table 1).
    REDCap
    suggested: (REDCap, RRID:SCR_003445)
    We used STATA version 15 for statistical analysis.
    STATA
    suggested: (Stata, RRID:SCR_012763)

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    Strengths and limitations: A major strength of this study is the large sample size of people with PCD from all over the world. PCD is a rare disease, and it can be difficult to recruit participants for research studies. COVID-PCD is a participatory study that was initiated, designed, and tested in collaboration with people who have PCD. This helped to boost study participation. The PCD support groups advertised the special questionnaire on COVID-19 vaccinations via social media and email networks before it was sent out, which may have positively affected the response rate. The questionnaire was completed in five languages which ensured that few people were restricted by language barriers. A limitation is that the study population may not be representative for all people with PCD but mainly those who are in contact with a patient support group. It is difficult to ascertain representativeness of the study population as we have no information about people with PCD who do not participate in the COVID-PCD study. When we compare those who completed the special questionnaire on vaccinations (61%) to those who did not (41%), we see that non-responders were slightly younger than those who responded and more often came from non-European countries (supplementary table 2). It is possible that respondents were more vaccine-willing than non-responders, which would have led to an overestimate of the vaccine uptake. Another limitation is that the sample size, although large for a rare diseas...

    Results from TrialIdentifier: We found the following clinical trial numbers in your paper:

    IdentifierStatusTitle
    NCT04602481RecruitingCOVID-19 in People With Primary Ciliary Dyskinesia

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

    Results from rtransparent:
    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • No protocol registration statement was detected.

    Results from scite Reference Check: We found no unreliable references.

    About SciScore

    SciScore is an automated tool that is designed to assist expert reviewers by finding and presenting formulaic information scattered throughout a paper in a standard, easy to digest format. SciScore checks for the presence and correctness of RRIDs (research resource identifiers), and for rigor criteria such as sex and investigator blinding. For details on the theoretical underpinning of rigor criteria and the tools shown here, including references cited, please follow this link.

  3. Version published to 10.1101/2021.11.08.21266047v1 on medRxiv