But worry about risk decreased as information increased
By Amy Ratner, Director Scientific Affairs
Although those with celiac disease have the same risk of getting COVID-19 as the general population, more than half of those surveyed in a recent study think they are more likely to get the virus or are not sure if their risk is greater.
Despite the initial, overall high rate of celiac-disease-specific fear about contracting COVID-19, the study found that perceived risk fell fairly quickly as the pandemic progressed and more information about the pandemic and the virus became available.
The international study was based on a survey of nearly 11,000 celiac disease patients from 10 countries recruited through celiac disease associations, visits to celiac disease clinics and social media. Beyond Celiac was among those who shared the survey with the celiac disease community.
The authors had previously published a study based on the survey that concluded the actual odds of contracting COVID-19 for people with celiac disease are similar to the general population, but they were also interested in investigating what it revealed about perceived versus real risk.
Overestimation of risk can lead to being overly anxious, overly cautious and can cause negative mental and physical health consequences, the study says.
“High levels of risk perception, such as those found in patients with celiac disease, may increase an individual’s pandemic-related stress and contribute to negative mental health consequences,” the authors wrote in the study published in the World Journal of Gastroenterology.
The drop in worry found in the study might have occurred because in some countries the first wave of the pandemic had already passed by the time people with celiac disease filled out the survey, according to the study. Or it might be attributed to the increase of information about celiac disease and COVID-19 being shared by national celiac disease associations around the world, the authors wrote.
The survey was conducted from March to June 2020, with the perception of risk related to celiac disease peaking in the first month at about 60 percent. Meanwhile, about 50 percent of those who took the survey in May thought they were at greater risk because of celiac disease and by June the number had fallen to about 35 percent.
A similar survey conducted by Beyond Celiac through its Go Beyond Celiac database had similar results. About 60 percent of 225 celiac disease patients who filled out the survey early in the pandemic said they think celiac disease puts them at greater risk for getting COVID-19 than the general population. Overall, people with conditions such as asthma were more likely to say they thought they would get worse symptoms if they did contract COVID-19.
Nearly 35 percent of those who took the survey said they were taking extra COVID-19 precautions because they had celiac disease. These included extensive social isolation reported by nearly 70 percent, extended use of personal protective equipment, including gloves and masks, even before it was widely recommended, by about 30 percent, and consistent hand washing and sanitation by about 20 percent.
Study participants credited celiac disease associations, such as Beyond Celiac, with being the main source of information about COVID-19 and celiac disease. Beyond Celiac created a dedicated COVID-19 section on its website, addressing the issue of increased risk early on. Information is continually updated as new developments in COVID-19 occur. Mostly recently information about celiac disease and COVID-19 vaccinations was added.
Meanwhile, only about 6 percent reported getting information about COVID-19 from any healthcare provider. This is consistent with earlier studies about celiac disease that have suggested patients are dissatisfied with information from their doctors, whom they feel have inadequate knowledge of celiac disease, study authors wrote.
Those who reported being associated with a celiac disease advocacy group were less likely to fear they had an increased risk of COVID-19 due to celiac disease, 50 percent compared to 60 percent among those who had no connection with a celiac disease patient organization.
In addition to the evidence from earlier studies about COVID-19 risk and celiac disease, credible information about the two conditions has been provided by celiac disease experts. Included are Salvo Alesci, MD, Beyond Celiac chief scientist and strategy office and Ken Kilgore, PhD, chief scientific investment .
Those who have celiac disease and chronic lung and heart disease, as well as type 1 diabetes were more likely to think they were at higher risk of getting COVID-19. Those conditions with or without the presence of celiac disease, have been identified as possibly increasing the risk of getting COVID-19 and potentially leading to a more severe case.
Women and younger people also showed a small, but significantly higher perception of risk, according to the study. Additionally, risk perception was greater in those who have celiac disease but reported not following a strict gluten-free diet compared to those who reported following the diet strictly, the study found.
While COVID-19 was thought to pose greater risk, more than half said they did not think their risk of getting infections in general was increased because of celiac disease. Studies have shown that celiac disease does increase the risk of general infections, the authors wrote, hypothesizing that some celiac disease patients are not fully informed about the potential consequences of celiac .”
Perception of risk also varied by country. It was highest in the United States, where 73 percent of about 400 people who took the survey identified higher risk because of celiac disease, followed by 67 percent of nearly 700 from Australia and 65 percent of more than 450 from New Zealand.
Perception of risk was lowest in Spain, with 19 percent of more thatn 200 survey respondents and Uruguay, with 23 percent of more than 300.
The largest number of survey responses, about 4,200, came from Argentina, where 63 percent perceived a higher risk. The second largest number of responses, about 3,800, came from Canada, where 52 percent thought they were at more risk.
Variations in how those with celiac disease perceived risk based on geography could be attributed to differences in culture, political climate, government communication, the country-specific impact of COVID-19, rates of infection, infection control measures and COVID-19 testing, according to the study. For example, Uruguay has less impact from COVID-19 due to swift lockdown, the authors wrote, and Spain was noted as having a low level of personal concern about the virus. Timing of the survey was also noted.
During the COVID-19 pandemic, there were significant reductions in emergency department visits, hospital admissions and non-urgent healthcare visits, the study points out. As result, virtual patient care emerged as an alternative. But “patients in low-resource areas, such as those without technology or internet [connection] are unable to access these alternative forms of healthcare and may be unequally affected by the pandemic,” the study says. The authors call for government agencies and other organizations to promote awareness and understanding in underserved communities.
You can read the study here.