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COVID-19 "long haulers" can experience a host of persistent symptoms, including headaches, brain fog, body aches, joint pain, fatigue and accelerated heart rate. (Photo: iStock)

They're called the "long haulers" – people experiencing persistent symptoms of COVID-19, who are now part of a club they never asked to join.

"I'd rather be back in the acute stage of COVID, than live this way," says *Mike Jones, 44, who never required hospitalization, but has been experiencing fatigue, brain fog, and an accelerated heart rate, since last spring. (*UHN News agreed to use a pseudonym to protect his privacy.)

"When you don't have the energy to do anything – I'm talking about simple tasks like vacuuming or walking around the block – you become increasingly deconditioned. You can cope for a time, but as the months wear on, it becomes more and more concerning."

But thanks to Toronto Rehab's COVID-19 Rehab clinic, long haulers like Mike can now manage their symptoms more effectively, with guidance from a team of healthcare professionals dedicated to getting patients back to their usual activities of daily living.

The COVID-19 Rehab clinic opened its virtual doors, in response to a growing need among patients who have recovered from their acute stage of the coronavirus, but are living with lingering symptoms.

It's estimated that up to 10 percent of patients with COVID-19 will require post-acute care.

"In follow-ups with patients, our partners at Toronto General and Toronto Western hospitals were finding that some were struggling with persisting symptoms," says Dr. Mark Bayley, Program Medical Director at Toronto Rehab, and a physician in the COVID-19 Rehab clinic.

"They weren't sick enough to require acute care, but they could still benefit from some degree of guidance," he says.

Zoom meeting of TR staff
The clinicians at Toronto Rehab's Virtual outpatient COVID-19 Rehab clinic help long-haulers get back to their usual activities of daily living. (Clockwise, from top left): Mary Barber, Patrice de Peiza, Mariam Salama, Lisa Caldana, Dr. Mark Bayley, Anna Maria Doumouras. Not pictured: Dr. Lindy Romanovsky, Natalie Fiore, Lucy Ruggiero, Amy Robidas. (Photo: UHN)

The COVID-19 Rehab clinic helps create a seamless pathway from acute to rehabilitative care, and opens a door for others, such as Mike, to finally get the physical, cognitive, and emotional support they've been missing.

COVID-19 Rehab Model in Action

An initial assessment includes a virtual visit with an occupational therapist (OT), physiotherapist (PT), and depending on a patient's age, either a physiatrist or geriatrician.

"The beauty of an interprofessional assessment is that we're all hearing the same information at the same time, and building on each other's questions," says OT Patrice de Peiza.

"If a patient says they can only walk outside for 10 minutes at a time, from my OT lens, I'm thinking about whether they need to learn energy conservation and pacing strategies, so they can incrementally and safely progress activity. However, my PT colleague is looking at a patient from the perspective of their exercise tolerance, while considering their oxygen saturation levels and physical symptoms with activity."

From that initial assessment, a care plan is created, and other professions, such as social work, are introduced as needed, since the team estimates that about one-third of patients require mental or psychosocial support.

"Dr. Bayley immediately ordered a stress [exercise] test, which helped me understand how I was performing, and how large the gap was, that I needed to fill," recalls Mike.

"When he told me I was in the 90th percentile, it gave me confidence in knowing that my body was healing, and that I just needed time and some direction, to further guide my recovery."

From there, he started meeting with Patrice, to address his fatigue and brain fog, through progressive planning and reflective activities.

Simple solutions, such as breaking housework down into smaller chunks helped avoid fatigue, and mental health exercises, like playing Sudoku, helped combat brain fog.

But for Mike, the exercise program prescribed by his PT, Mariam Salama, made the greatest impact on his recovery. 

"When I told Mariam it was important for me to preserve some of my energy for daily walks – which got me out of the house and into the fresh air – she created a circuit that was lower in intensity, to accommodate my interests," recalls Mike.

"The plan was customized and collaborative – I knew she was listening to me."

Future of COVID-19 Rehab

As they look to the future, the team is hoping to recruit additional clinicians to meet the growing demand, and to develop targeted patient education materials for this population.

They'd also like to conduct a research study to help inform COVID rehab care, as they have been collecting subjective pre- and post-treatment outcome measures to assess changes in fatigue levels, quality of life, and the overall impact of COVID-19 on the lives of these patients. 

"We are learning, along with those we serve, about the long-term consequences of COVID that some people are experiencing," says Dr. Bayley.

"We will continue to study both the causes of the difficulty and rehabilitation strategies that can be used to resolve the symptoms."

Until then, the team is focused on helping patients get back to their daily lives. And that gives individuals like Mike peace of mind, as he continues on his recovery journey. 

"Patients need reassurance – that what we're feeling is not just chalked up to anxiety, even though we're all still learning so much about COVID," he says.

"Even once I'm discharged, I know I have a group of professionals who I can count on. If I need help, I know they'll be there for me."

Meet the COVID-19 Rehab clinicians

A patient's first appoint with the COVID-19 Rehab team is conducted interprofessionally. "We take turns asking questions that benefit all of us, and interpret the answer through our own professional lenses," says OT Patrice de Peiza. Here's some of the clinicians a patient might see.

Physiatrist: Dr. Mark Bayley

Geriatrician: Dr. Lindy Romanovsky

Occupational Therapists: Patrice de Peiza; Mary Barber

Physiotherapists: Mariam Salama; Anna Maria Doumouras

Occupational/Physiotherapy Assistant: Natalie Fiore

Social Worker: Lucy Ruggiero

Registered Nurse: Amy Robidas

Service Coordinator: Lisa Caldana& Ilyse Lax (former service coordinator)

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