Rehab centres and research clinics are cropping up across the country
RESPONSE PROVIDES MANAGEMENT AND RELIEF FOR THE RISING NUMBER OF COVID-19 LONG HAULERS
THE FRIGHTENING MESSAGE REALLY IS THAT THIS ONE HIT PROBABLY ENDED UP REDUCING LUNG FUNCTION BY AN AVERAGE OF 20 PER CENT IN THESE PATIENTS, WHICH MAY BE PERMANENT BASED ON WHAT WAS SEEN WITH SARS AND MERS
— DR. CHRISTOPHER RYERSON
Rachelle Mccready has been a nursing educator for more than 20 years at the University Hospital intensive care unit (ICU) in London, Ont. At 57, she had no history of major medical issues. Last April, she was training nurses for the ICU in response to the COVID-19 pandemic, and developed what she thought was a cold. She had a COVID swab done, it came back positive.
She stayed home at first, suffering only from fatigue; she had no fever, cough or shortness of breath. But as she became more ill, her colleagues encouraged her to go to hospital. In the emergency department, Mccready's oxygen saturation was so low that she was admitted to hospital, where she remained for nine days. McCready's chest X-ray showed a “white out” in her lungs — she was hypoxic, a term used to describe someone who is not getting enough oxygen.
Following discharge, McCready referred herself to a COVID followup clinic at London Health Science Centre (LHSC). There, she says, she has received “the best health care since getting COVID.
“The biggest thing was that they listened to me.”
Across Canada, COVID-19 followup, rehab and recovery clinics like the one at LHSC are cropping up to better understand and serve the needs of those who have survived the virus. The clinics are evolving as the needs of these patients are better understood.
It is becoming clear that many COVID survivors are struggling to get back to their normal lives. They are suffering from what possibly could be long-term health challenges, and experts are learning what this really means. Doctors have identified many long- term effects — shortness of breath, nerve pain, fatigue and mental-health issues. As the number of COVID cases continues to rise, experts agree that many Canadians will face long-term challenges.
Dr. Christopher Ryerson, a respirologist and associate professor at the University of British Columbia Centre for Heart Lung Innovation, has been involved in the development of two COVID clinics running in Vancouver. He says the clinics were established to learn more about the disease and to “create a platform for various researchers to study long-term outcomes of patients in comprehensive and collaborative ways.”
At the beginning of the pandemic in Vancouver, every COVID-19 patient discharged from hospital was automatically referred to a respiratory clinic. Without guidelines during the early stage of the pandemic, doctors used a standardized clinic research model for respiratory patients that included breathing tests, heart ultrasounds, chest X- rays and questionnaires. The initial plan was for every patient to be seen after six, 12 and 24 months. It became evident early on that COVID patients had more complex issues beyond the respiratory system, and that more specialists had to be involved in their care. The clinic, staffed primarily by general internists, can refer patients to 15 different specialists.
Ryerson says that doctors are learning more about the long-term consequences of the virus. “About half have significant abnormalities in patient- reported outcome measures” — aspects of their health reported by the patients. Ryerson and his colleagues looked at the patients' quality of life, frailty, shortness of breath, mood and sleep.
Additional findings suggest that there is loss of lung function. Ryerson says that at three months post infection, survivors show a 20 per cent reduction in their lungs' ability to exchange gases, and that 88 per cent had abnormal lung CT findings. Twenty per cent had scarring in the lungs, which suggests the likelihood of permanent lung damage from the disease, Ryerson says.
“The frightening message really is that this one hit probably ended up reducing lung function by an average of 20 per cent in these patients, which may be permanent based on what was seen with SARS and MERS,” he says.
SARS, a coronavirus that spread across the world in 2003, caused a severe acute respiratory syndrome. A study in Beijing, China followed 71 patients with SARS from 2003 to 2018. Though lung injury improved after the first year of diagnosis, this improvement plateaued and patients experienced decreased lung function throughout the remainder of the study.
The followup clinic at LHSC where Mccready is a patient was developed in April out of concern for what would happen to COVID patients following their discharge from hospital. Now, everyone in the London-middlesex region diagnosed with COVID is offered a referral to the LHSC clinic.
Dr. Erin Spicer is a general internist who helps run the clinic. She says the clinic monitors COVID patients and identifies long- term complications early, “so can intervene early and prevent consequences of the disease that have been seen in past pandemics, including H1N1 and SARS.”
The clinic is following more than 190 patients. Some require more frequent follow-ups than others. Patients are showing persistent nerve symptoms, brain fog and confusion, and are being referred to neurologists. Many patients in the clinic also complain of weakness months after their initial diagnosis. The doctors at LHSC have noted that a significant number of patients require referrals to ear, nose and throat specialists because they have prolonged inability to smell.
Spicer says that as many as 46 per cent of patients complained of anxiety, changes in mood, symptoms similar to post-traumatic stress disorder (PTSD), social isolation and bullying because of their diagnosis.
Dr. Angela Cheung and Dr. Margaret Herridge are co- leads of the Canadian COVID-19 Prospective Cohort Study ( CANCOV), which involves multiple studies across Canada, including at sites in British Columbia, Alberta, Quebec and Ontario. The group runs research clinics and also provides clinical care. Both hospitalized and non-hospitalized Covid-positive patients are included in their studies. Patients can be physician-referred or self-referred.
All patients undergo assessments at one, three, six and 12 months post COVID. Under the CANCOV umbrella, specialists are available to provide more detailed testing depending on the needs of the patient. More than 100 investigators with clinical and research expertise are involved. While the goal of CANCOV is to raise the standard of care for patients with COVID, it also hopes to provide clinical guidelines for policy-makers, and chart a full description of the various ways COVID affects the body's organs. There are currently 200 people being studied; ultimately, it will involve 2,000 patients and 500 caregivers. The group is also working with the World Health Organization and is collaborating with the United States, United Kingdom, Australia and Brazil.
“We are trying to understand what it means to be a long-hauler,” notes Cheung.
Dr. Mark Bayley, medical program director at the Toronto Rehabilitation Institute, is managing patients in a COVID recovery program in which, he says, the institute is learning alongside its patients. Rehab has become essential for the ongoing recovery of some COVID patients.
“The goal of the clinic is to help people who've been left with long-term consequences of COVID to get back to their normal life and to understand why they're having difficulty and not able to get back to their normal life,” Bayley says.
Bayley says the institute's staff realized that people who have survived COVID might be very similar to those who have had lung disease or long stays in intensive-care units. It has been well known that patients who have been intubated and ventilated for more than a week are likely to have long-term problems.
“Even the patients that didn't have severe COVID were having difficulties. They were complaining of extreme fatigue, they were complaining of nerve pain, they were complaining of brain fog,” Bayley says. “Some were feeling anxiety, some were showing symptoms of PTSD and almost all were complaining of an inability to exercise,” he says.
Eight months after diagnosis, Mccready, the nurse instructor, feels she has “finally turned a corner.”
A few months after her diagnosis she was still tired and short of breath, but she started working four hours a day, hoping to ease back into her role. But she wasn't getting better. She says she still couldn't take a really deep breath and required two courses of steroids. McCready still has what she calls “the big three” — shortness of breath, brain fog and fatigue.
“It's disconcerting not being able to perform at the level you are used to,” she adds.
In addition to physical symptoms, Bayley estimates that 30 to 50 per cent of survivors are experiencing some mental-health issues. As a result, the rehab centre has been using social work services.
“Whenever you start up a clinic that's a new population, you have to learn enough about the population before you figure out what's common enough that you want to bring it into your clinic,” he says.
Doctors agree that followup clinics offer an opportunity to understand the virus better and to be better equipped to manage those who have been infected — lessons that will help when the next big crisis to come along.
There are now more than 315,000 cases of COVID across Canada. Ryerson says he believes we're less than halfway through this pandemic from an absolute numbers perspective. The number of people who will have long-term challenges in unknown.
Bayley estimates “it seems to be somewhere between five to 10 per cent (of COVID survivors) who have persistent problems. Even at that proportion, the health system really will have trouble managing that magnitude of people.”
FIVE TO 10 PER CENT ... HAVE PERSISTENT PROBLEMS.