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Survey hopes to uncover challenges and treatments for COVID long haulers

A continuous survey has been launched to better understand the symptoms, implications and potential treatments for those dealing with long COVID.

It’s a part of the Long COVID Patient Experience Project and aims to learn about long COVID over time. The online survey is open to adults on Vancouver Island and the Sunshine Coast 19 years and older and living with long COVID.

Long COVID occurs when an individual experiences COVID-19 symptoms for longer than three months.

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According to a recent survey from the federal government, nearly 15 per cent of respondents with confirmed cases are considered to be long haulers.

In addition, the survey found almost half of respondents had symptoms for a year or longer and over 20 per cent said their symptoms limited their daily activities.

UBC Department of Physical Therapy knowledge broker and clinical professor Allison Hoens says the goal is to keep learning as symptoms evolve.

“The point of this is it’s not a single one-off timed survey because that only provides you with a snapshot,” said Hoens. “We don’t understand enough about the burden of long COVID yet and how symptoms change over time.”

Researchers call the survey data gathering “citizen science.” Co-lead of the project and UBC professor Dr. Linda Li says the system allows others to learn more specific information.

Hoens also explains it can be used as a comparison tool to help others in different stages of long COVID.

“So they could say ‘Oh, I want to compare my response to this questionnaire with other women in this age category living in the region’ for example,” said Hones. “So that they get a sense of how unique or similar their symptoms are to other people.”

Hoens adds the goal of the survey is to identify questions scientists have not already thought of.

The hope is to find the answers to them in order to improve patient care heading forward.

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