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COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia

Eva S.L. Pedersen, Eugénie N.R. Collaud, Rebeca Mozun, Cristina Ardura-Garcia, Yin Ting Lam, Amanda Harris, Jane S. Lucas, Fiona Copeland, Michele Manion, Bernhard Rindlisbacher, Hansruedi Silberschmidt, Myrofora Goutaki, Claudia E. Kuehni COVID-PCD patient advisory group
ERJ Open Research 2021 7: 00843-2020; DOI: 10.1183/23120541.00843-2020
Eva S.L. Pedersen
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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  • ORCID record for Eva S.L. Pedersen
Eugénie N.R. Collaud
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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Rebeca Mozun
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
2Graduate School for Cellular and Biomedical Sciences, University of Bern, Switzerland
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Cristina Ardura-Garcia
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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  • ORCID record for Cristina Ardura-Garcia
Yin Ting Lam
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
2Graduate School for Cellular and Biomedical Sciences, University of Bern, Switzerland
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Amanda Harris
3Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
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  • ORCID record for Amanda Harris
Jane S. Lucas
3Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
4University of Southampton Faculty of Medicine, Academic Unit of Clinical and Experimental Medicine, Southampton, UK
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  • ORCID record for Jane S. Lucas
Fiona Copeland
5PCD Family Support Group, Ciliopathy Alliance, London, UK
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Michele Manion
6PCD Foundation, Minneapolis, MN, USA
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Bernhard Rindlisbacher
7Selbsthilfegruppe Primäre Ciliäre Dyskinesie, Steffisburg, Switzerland
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Hansruedi Silberschmidt
8Vorstand/Schriftführer des deutschen Vereins Kartagener Syndrom und Primäre Ciliäre Dyskinesie eV, PCD-betroffen, Wetzikon, Switzerland
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Myrofora Goutaki
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
9Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Bern, Switzerland
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Claudia E. Kuehni
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
9Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Bern, Switzerland
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  • For correspondence: claudia.kuehni@ispm.unibe.ch
  • Article
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  • FIGURE 1
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    FIGURE 1

    Timeline and follow-up procedures of the coronavirus disease 2019 (COVID-19) and primary ciliary dyskinesia (PCD) study.

  • FIGURE 2
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    FIGURE 2

    Number of people with primary ciliary dyskinesia (PCD) who enrolled in the study by November 2, 2020 (cumulative) and number and per cent who completed the weekly follow-up questionnaire.

Tables

  • Figures
  • TABLE 1

    Collaborating primary ciliary dyskinesia (PCD) support organisations

    PCD support organisationCountryContact personsWebsite
    Selbsthilfegruppe Primäre Ciliäre DyskinesieSwitzerlandBernhard Rindlisbacher
    Verein Kartagener-Syndrom und PCDGermanyHansruedi Silberschmidtwww.kartagener-syndrom.org/index.php/verein
    PCD Family Support Group UKUKLucy Dixonwww.pcdsupport.org.uk
    PCD FoundationUSA and CanadaMichele Manionwww.pcdfoundation.org
    PCD Australia Primary Ciliary DyskinesiaAustraliaCatherine Kruljacwww.pcdaustralia.org.au/
    Associazione Italiana Discinesia Ciliäre Primaria Sindrome di Kartagener OnlusItalyLetizia Andolfi, Sara Belluwww.pcdkartagener.it/associazione/
  • TABLE 2

    Information collected in the coronavirus disease 2019 (COVID-19) and primary ciliary dyskinesia (PCD) study

    QuestionnaireTiming of distributionInformation collected
    Registration questionnaireAt registrationLanguage, year of birth, consent to participate, e-mail address
    Baseline questionnaireRight after registrationModule 1: Demographic information (country, region); contact information in case of hospital stay; history of COVID-19 infection (tests, test results, severity of infection, symptoms, people in household who had a COVID-19 infection), other infections
    Module 2: PCD diagnosed by a physician (study eligibility question), PCD in close family, prior diagnostic tests for PCD and test results (nasal nitric oxide, high-speed video microscopy, electron microscopy, genetic test), year of PCD diagnosis, situs inversus, congenital heart defect, bronchiectasis, infections (bacteria, viruses, fungi), lung function, height, weight, airway clearance therapy, physiotherapy, oxygen use, antibiotic treatments, hospital stays, flu vaccinations
    Comorbidities and their treatments including asthma, hypertension, diabetes, heart failure, primary immunodeficiency, cancer, inflammatory bowel disease, and stroke
    Module 3 (adapted from the standardised FOLLOW-PCD patient questionnaire [26]): Current symptoms: Symptoms from nose or ears, hearing problems, headaches, snoring, coughing, coughing up mucus, wheezing, shortness of breath, chest pain, fever, general feeling of being unwell
    Module 4 (adapted from the standardised FOLLOW-PCD patient questionnaire [26]): Employment/educational status, profession, days missed from work due to PCD, mode of transportation to work/school, highest level of education Level of physical activity, types of sports/activities regularly performed, smoking status, number of cigarettes per day, years of smoking, year of quitting smoking, anyone else in household smoking, nutrition (appetite in last 3 months, additional drink supplements, other supplements), living conditions (type of home, number of bedrooms in home, access to garden/yard), change in living condition due to COVID-19 pandemic
    Follow-up questionnaireWeekly (period can be adapted)Current symptoms (in the past 7 days)
    Recent COVID-19 infections: Contact with health professional due to COVID-19 infection, medication taken in the past 7 days, change in usual therapies past 7 days
    Contact behaviour in the past 7 days: Activities (e.g. stayed at home, went grocery shopping, went out for exercise, went occasionally or regularly to workplace/school, etc.), use of public transportation, possible to keep 2 m distance from other people during public transport/at work/at school, number of people having close contact with
    Hospitalisation questionnaireIf a participant is hospitalisedDate of hospitalisation, hospital unit in which patient was treated, duration of hospital stays, treatments, recommendation after discharge
    Thematic questionnairesIn irregular intervals as research questions arisePotential topics: Availability of PCD treatments during COVID-19 pandemic, physical activity during COVID-19 pandemic, protection measures at schools and workplaces, e.g. masks, plastic face shields, gloves, etc., anxieties and fears related to the COVID-19 pandemic
  • TABLE 3

    Participant involvement in the study

    Study stepInputs from PCD support groups
    Concept and design of study
    • The idea for the study came from PCD support groups

    • The study design was developed in close communication between PCD support groups and the study team

    Questionnaire design
    • The content of the baseline and follow-up questionnaires was decided based on ideas from PCD support group representatives, healthcare staff and researchers

    • Wording of the questionnaires was checked by PCD support group representatives to ensure that the language was understandable and meaningful for all

    Recruitment of participantsStudy participants are recruited using measures such as:
    • PCD support groups social media post links to the study website

    • E-mails to PCD support group members

    • Presentations about the study at PCD support group meetings and in newsletters

    Choice and interpretation of resultsSummarised results displayed on the website are based on what is most important for participants
    Thematic questionnairesThematic questionnaires are developed based on suggestions from participants and PCD support groups
    Display of results on study websiteParticipants can suggest results to be posted on the website and how to phrase them

    PCD: primary ciliary dykinesia.

    • TABLE 4

      Country of residence and sex of participants, displayed in total and by age groups (n=556)

      Total0–14 years15–29 years30–49 years50 years and above
      Subjects n55617213615494
      Country#
       England121 (22)34 (20)32 (24)36 (23)19 (20)
       USA101 (18)35 (20)23 (17)26 (17)17 (18)
       Germany78 (14)34 (20)9 (7)21 (14)14 (15)
       Switzerland42 (8)8 (5)16 (12)5 (3)13 (14)
       Australia27 (5)11 (6)5 (4)5 (3)6 (6)
       Italy22 (4)7 (4)6 (4)9 (6)0
       Canada20 (4)7 (4)3 (2)6 (4)4 (2)
       The Netherlands18 (3)2 (1)8 (6)5 (3)3 (3)
       Scotland12 (2)4 (2)3 (2)3 (2)2 (2)
       Denmark10 (2)1 (1)4 (3)2 (1)3 (3)
       France10 (2)3 (2)2 (1)2 (1)3 (3)
       Norway10 (2)2 (1)06 (4)2 (2)
       Other European countries60 (11)14 (8)19 (14)22 (14)5 (5)
       Other non-European countries25 (4)10 (6)6 (4)6 (4)3 (3)
      Sex (n=555)
       Male214 (39)92 (53)49 (36)41 (27)32 (34)
       Female340 (61)80 (47)86 (63)113 (73)61 (66)
       Other1 (0)01 (1)00

      Data are presented as n (%). #: countries with n≥10 displayed in table, countries with n<10 were categorised into other European countries and other non-European countries.

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      COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia
      Eva S.L. Pedersen, Eugénie N.R. Collaud, Rebeca Mozun, Cristina Ardura-Garcia, Yin Ting Lam, Amanda Harris, Jane S. Lucas, Fiona Copeland, Michele Manion, Bernhard Rindlisbacher, Hansruedi Silberschmidt, Myrofora Goutaki, Claudia E. Kuehni
      ERJ Open Research Jan 2021, 7 (1) 00843-2020; DOI: 10.1183/23120541.00843-2020

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      COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia
      Eva S.L. Pedersen, Eugénie N.R. Collaud, Rebeca Mozun, Cristina Ardura-Garcia, Yin Ting Lam, Amanda Harris, Jane S. Lucas, Fiona Copeland, Michele Manion, Bernhard Rindlisbacher, Hansruedi Silberschmidt, Myrofora Goutaki, Claudia E. Kuehni
      ERJ Open Research Jan 2021, 7 (1) 00843-2020; DOI: 10.1183/23120541.00843-2020
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