Researchers call for more Albertans to complete post-COVID survey

Close to 10,000 Albertans have completed a survey on post-COVID symptoms, providing data that researchers say will help create a provincial roadmap for managing the condition.

Experts working on the study say they believe the information collected will help both clinicians and researchers better understand post-COVID symptoms particularly among people who weren't sick enough to be hospitalized.

"Ultimately we'd like to sort of be able to do some modelling here and predict who's more likely to have long COVID or post-COVID symptoms," said University of Alberta faculty of nursing professor Colleen Norris, one of the researchers leading the project.

Though respondents were initially limited to people contacted after taking a PCR test for COVID-19, the research team is hoping as many Albertans as possible will fill out the survey, which is now open to anyone and available online.

"We need to get as much input as we can, especially now that the testing isn't as structured people just test whenever and so we don't know when people have COVID or not, and if new symptoms are coming or not," said Jeff Bakal, program director for Alberta Health Services' provincial research and data services.

"This is our best chance of figuring all that out."

Both COVID positive and negative responses

In October 2021, AHS allowed the researchers to mail letters to people who had done a PCR test for COVID-19 both those who tested positive and negative including to people who had a PCR test as far back as March 2020.

Bakal said they've mailed out about 120,000 letters. So far, they've collected responses from about 9,600 adults 7,300 who tested positive for COVID-19 and 2,300 negative.

Bakal and Norris say participants have been surprisingly representative of the overall population, and that responses have had a good range when it comes to both age and geographic location.

The questions look at symptoms experienced both before and after taking the test. The survey also asks about immunization.

Work is still underway to clean up the data that will allow it to be used by other researchers for their own projects. Norris and Bakal said the findings will also help with the development of a data dashboard on post-COVID conditions for Alberta Health Services.

But they have released some preliminary data on symptoms.

Of the 2,422 people who tested positive for COVID-19 more than a year ago, the five most common symptoms reported were:

• Fatiguein 44 per cent of respondents
• Headachein 39 per cent of respondents
• Difficulty sleeping in 33 per cent of respondents
• Confusion in 26 per cent of respondents
• Dizziness in 26 per cent of respondents.

Those same symptoms were also reported by people who tested negative, with fatigue at 28 per cent, headache at 32 per cent, difficulty sleeping at 24 per cent, confusion at 10 per cent, and dizziness at 14 per cent.

Bakal said because of the large sample size, the confidence intervals will be +/-

Even though reported symptoms have been wide-ranging, and some, like fatigue, might be dismissed as innocuous by general practitioners, Bakal and Norris think the high proportion of people reporting lingering issues is significant.

Pushing forward to determine if the symptoms are related to a COVID infection could bring important progress in women's health in particular, said Norris, who was appointed the Cavarzan Chair in Mature Women's Health Research earlier this year.

"Women consistently report more symptoms and a higher burden of symptoms than the men do, and it's going to affect our whole healthcare system," she said.

A Calgary doctor, who is also researching long COVID, said he wishes surveys like this had gotten underway much earlier in the pandemic.

"That opportunity passed, and what we have now is we're sort of going back and trying to grab what we can, to learn what we can," said Dr. Satish Raj, professor of cardiac sciences at University of Calgary.

Earlier this month, Raj's team published their first preprint a preliminary version of a study before it goes to peer review which delves into cardiovascular abnormalities that followed COVID-19 infections in a group of 70 patients.

Raj said a challenge AHS and researchers have been up against is provincial privacy laws which prevented collection of data early on in the pandemic, as soon as people were testing.

He said while retroactively asking people to go back and self-report symptoms is less ideal, it's still good to have the information

"I think the value is in, not necessarily the exact numbers, but getting a sense of what the common complaints are," Raj said.

Raj said that while research is helping to create a better understanding of what post-COVID conditions are, there's still a long way to go particularly when it comes to treatment.