As of May 12th (after 37 days) there had been 420 responses in NZ.
Participants of the survey were predominantly female (86%), median age of 45 years.
The average time since coeliac disease diagnosis was 10.1 years and of those diagnoses, most were done with both blood tests AND biopsy (79%). Most patients state that their coeliac disease is well controlled (74.9%) and only 6.8% have symptoms more than twice a month. Only 3% were on steroids and 4% on immunosuppressant medicines. Participants mostly follow a strict gluten-free diet (GFD) (70%) .
Eighteen patients (4%) have attended the emergency department due to COVID related symptoms. There have been 19 tests for COVID-19 and none tested positive. In the last month,76 (18%) participants had respiratory symptoms, but no patient was hospitalized for a respiratory infection.
58% of patients state that their knowledge on how COVID may affect coeliac disease patients is poor or very poor.
Most participants are not taking extra precautions for COVID-19 as a result of their coeliac disease (61.6%), while 32.2% do, stating they follow social distancing/isolation/PPE use.
Most participants are not aware or are unsure if there is a generally increased risk of infection due to their coeliac disease (75.7%) and 76.2% state the same in terms of their COVID-19 risk.
Patients generally learn about the relationship between COVID-19 and coeliac disease through internet (50.4%) with 62.2% wanting more information.
If you have not completed the survey and would like to participate please use the link below:
https://redcapfarncombe.mcmaster.ca/surveys/?s=MY749FDFTL
Request for survey participation from Professor Andrew Day (Chair)
Coeliac NZ Medical Advisory Panel