Figures
- FIGURE 1
Timeline and follow-up procedures of the coronavirus disease 2019 (COVID-19) and primary ciliary dyskinesia (PCD) study.
- 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
- TABLE 1
Collaborating primary ciliary dyskinesia (PCD) support organisations
PCD support organisation Country Contact persons Website Selbsthilfegruppe Primäre Ciliäre Dyskinesie Switzerland Bernhard Rindlisbacher Verein Kartagener-Syndrom und PCD Germany Hansruedi Silberschmidt www.kartagener-syndrom.org/index.php/verein PCD Family Support Group UK UK Lucy Dixon www.pcdsupport.org.uk PCD Foundation USA and Canada Michele Manion www.pcdfoundation.org PCD Australia Primary Ciliary Dyskinesia Australia Catherine Kruljac www.pcdaustralia.org.au/ Associazione Italiana Discinesia Ciliäre Primaria Sindrome di Kartagener Onlus Italy Letizia Andolfi, Sara Bellu www.pcdkartagener.it/associazione/ - TABLE 2
Information collected in the coronavirus disease 2019 (COVID-19) and primary ciliary dyskinesia (PCD) study
Questionnaire Timing of distribution Information collected Registration questionnaire At registration Language, year of birth, consent to participate, e-mail address Baseline questionnaire Right after registration Module 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 strokeModule 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 questionnaire Weekly (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 withHospitalisation questionnaire If a participant is hospitalised Date of hospitalisation, hospital unit in which patient was treated, duration of hospital stays, treatments, recommendation after discharge Thematic questionnaires In irregular intervals as research questions arise Potential 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 step Inputs 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 participants Study 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 results Summarised results displayed on the website are based on what is most important for participants Thematic questionnaires Thematic questionnaires are developed based on suggestions from participants and PCD support groups Display of results on study website Participants 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)
Total 0–14 years 15–29 years 30–49 years 50 years and above Subjects n 556 172 136 154 94 Country# England 121 (22) 34 (20) 32 (24) 36 (23) 19 (20) USA 101 (18) 35 (20) 23 (17) 26 (17) 17 (18) Germany 78 (14) 34 (20) 9 (7) 21 (14) 14 (15) Switzerland 42 (8) 8 (5) 16 (12) 5 (3) 13 (14) Australia 27 (5) 11 (6) 5 (4) 5 (3) 6 (6) Italy 22 (4) 7 (4) 6 (4) 9 (6) 0 Canada 20 (4) 7 (4) 3 (2) 6 (4) 4 (2) The Netherlands 18 (3) 2 (1) 8 (6) 5 (3) 3 (3) Scotland 12 (2) 4 (2) 3 (2) 3 (2) 2 (2) Denmark 10 (2) 1 (1) 4 (3) 2 (1) 3 (3) France 10 (2) 3 (2) 2 (1) 2 (1) 3 (3) Norway 10 (2) 2 (1) 0 6 (4) 2 (2) Other European countries 60 (11) 14 (8) 19 (14) 22 (14) 5 (5) Other non-European countries 25 (4) 10 (6) 6 (4) 6 (4) 3 (3) Sex (n=555) Male 214 (39) 92 (53) 49 (36) 41 (27) 32 (34) Female 340 (61) 80 (47) 86 (63) 113 (73) 61 (66) Other 1 (0) 0 1 (1) 0 0 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.
