Practice statements on helping patients with post COVID-19 condition

There are now 11 post COVID-19 condition (PCC) good practice statements to help guide health care professionals, public health officials, and policy makers in decision-making related to the care of their patients and the public. These evidenced-based guidelines were developed by a team from McMaster University, with financial and scientific support from the Public Health Agency of Canada (PHAC) and were published on the CAN-PCC website in January, 2024. The PCC good practice statements specific to healthcare professionals provide guidance in prevention, diagnosis, and clinical interventions. They also touch on neurologic and psychiatric topics, and pediatric and adolescent topics.The World Health Organization (WHO) defines PCC, also known as long COVID, as “the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.” Dr. Angela Cheung, professor of medicine at the University of Toronto and senior physician scientist at University Health Network (UHN), emphasizes that it is important for healthcare professionals to rule out any other possible diagnosis first. “For example, fatigue is one of the most common complaints (of long COVID) and making sure someone is not anemic, that the TSH is normal, are important things in the work up of fatigue,” she says. With women, "I can’t tell you how many we have picked up, especially younger women, with menorrhagia and iron deficiency anemia, so you need to fix that first.”At the end of 2023, Statistics Canada released a study done in partnership with PHAC, shedding light on Canadians' experiences with the condition. Long-term symptoms are defined in the study as the presence of symptoms three or more months after a confirmed or suspected COVID-19 infection that could not be explained by anything else. The study was based on data from the 2022 Canadian COVID-19 Antibody and Health Survey-Cycle 2 and 2023 follow-up survey of Canadians aged 18 years and older, residing in private households in the 10 provinces.“As of June 2023, about two-thirds of Canadian adults reported at least one confirmed or suspected COVID-19 infection, with many reporting more than one infection since the beginning of the pandemic,” the study said. And about one in nine (11.7%) Canadian adults had experienced long-term symptoms following a COVID-19 infection. This represents 3.5 million Canadians, of which 2.1 million reported they were still experiencing symptoms with half of those not seeing any improvement in symptoms over time. Two-thirds (66.4%) of Canadian adults who sought healthcare services for their long-term symptoms reported not receiving adequate treatment, service, or support for any of their symptoms.The new Canadian Guidelines for PCC strongly emphasize providing “accessible, appropriate, and culturally responsive care.” Indeed, timely care can mitigate the impact of PCC.However, it can be difficult to know when to suspect PCC. The following two good practice statements provide guidance.“Healthcare professionals should evaluate people for the possibility of post COVID-19 condition (PCC) if they have symptoms that have negative impact on daily activities or quality of life and persist beyond 12 weeks after the diagnosis of COVID-19,” reads an ungraded good practice statement. The remarks add to the understanding of PCC. “Symptoms can persist, be intermittent, or progressive. People may have different trajectories of disease over time and may seek care at different timepoints.”The second good practice statement says, “Healthcare professionals should ensure a confirmed, suspected, or probable COVID-19 infection occurred before post COVID-19 condition (PCC) symptoms appeared in order to suspect the condition.” Suspected, probable, and confirmed COVID-19 are defined according to the WHO definition. What should doctors know about long COVID? “That it exists. That it is a physical thing. It’s not only in the minds of people, because I think some docs still think it is a psychiatric issue,” says Dr. Cheung. However, PCC can have mental consequences, which is not surprising she says. It’s the same as if someone were given a cancer diagnosis, which would make a person anxious and depressed. Dr. Cheung says long COVID is an evolving science. “What we learn is what’s evolving. And so, when people don’t understand exactly what is going on and all your test results look fairly normal, sometimes physicians will say, ‘Well, there is nothing and it must be in your head.’ I don’t think that’s really helpful to patients, because patients need to understand that their physician is behind them and sort of learning together. It’s kind of like HIV in the early days.”Another good practice statement is “Healthcare professionals should actively listen to and validate the lived experiences of people with post COVID-19 condition (PCC).” Dr. Cheung has met many very well-functioning people who have long COVID. “Some are highly motivated people, CEOs, lawyers, physicians. They run marathons, and when they can’t run marathons and they get short of breath with walking a block that makes them unhappy and anxious.” It’s especially difficult for people when they don’t know when they are going to be better or how to get rid of PCC.“For fatigue resting and pacing helps and people will get better,” Dr. Cheung adds. “But if they keep trying to do more and they crash or have more flare ups, then it’s harder to get better.”Do people fully recover from long COVID? “A lot of people are recovering 80%-to-90% and then it’s really hard to get the last little bit,” says Dr. Cheung. There is a Canadian and international push to understand long COVID and to find treatments. In addition to the Canadian Guidelines for Post COVID-19 Condition, there are other resources and learning opportunities to help health care professionals keep up to date with advancements.One such resource is the Long COVID Web, which received a $20 million investment from the Canadian Institutes of Health Research (CIHR) in 2023. The Long COVID Web research network is led by Dr. Cheung.This website is being built, but now offers monthly webinars, postings about trusted resources (in progress), and newsletters. This spring, there will be links to evidenced-based guidance from organizations in Canada and internationally in the resource list. Also expected to be launched this spring is the national Enhancing Community Health Outcomes (ECHO) program, which is an open educational forum for clinicians. People will be able to bring cases and ask questions, says Dr. Cheung.Another Government of Canada funded initiative is RECLAIM (Recovering from COVID-19 Lingering Symptoms Adaptive Integrative Medicine Trial). “RECLAIM is an adaptive platform randomized trial comparing the effectiveness of various interventions for lingering symptoms of COVID-19,” says the website.

Practice statements on helping patients with post COVID-19 condition

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