Thank you very much for the invitation and the opportunity to speak at the meeting of the House of Commons Standing Committee on Health today.
My name is Kelly O'Brien. I'm a physiotherapist and associate professor in the department of physical therapy at the University of Toronto. I am a co-director of this newly established rehabilitation science research network for COVID with the Temerty Faculty of Medicine at the U of T and co-director with Long COVID Physio, wan international patient-led association of physiotherapists living with long COVID and their allies.
As a Canada research chair in episodic disability and rehabilitation, my research has primarily been grounded within the foundational context of HIV. My colleagues and I are now applying these lessons learned from the context of HIV to the context of long COVID.
We know that a growing number of individuals are living with persistent signs and symptoms following infection with COVID-19. Defined by the World Health Organization, post-COVID condition, or long COVID, occurs in individuals with a history of probable or confirmed SARS-CoV-2, infection usually three months from the onset of COVID-19, with symptoms that last for at least two months.
An estimated 144 million individuals are living with long COVID globally. A recent systematic review involving 50 studies, of which 41 were included in a meta-analysis, concluded a pooled global prevalence of long COVID at 43%. This expands to non-hospitalized as well as hospitalized patients living with COVID.
The long-term trajectory of long COVID remains unknown. Therefore, conceptualizing the context of disability in long COVID is essential for better understanding the health-related challenges experienced by this community. There is an opportunity to apply the lessons learned in other chronic and episodic conditions such as HIV to understand and conceptualize disability experienced among this community.
Lesson one is to anticipate multi-dimensional disability and recognize its potentially episodic nature. Long COVID has a mass disabling effect, and the episodic disability framework was derived from the perspectives of adults living with HIV to characterize the multi-dimensional and episodic nature of health-related challenges.
This framework includes six dimensions of disability, all of which may apply to the context of long COVID. For example, there are physical health challenges such as fatigue, post-exertional symptom exacerbation, malaise or shortness of breath seen among individuals living with long COVID. As was mentioned earlier, there are cognitive health challenges, such as difficulty thinking or concentrating, resulting in mental and emotional health challenges in some cases, such as anxiety and depression. There are difficulties carrying out day-to-day activities, such as showering or meal preparation. This all accumulates in having an impact on one's challenges to social inclusion, such as engaging in meaningful life roles like employment. This framework also acknowledges the disability dimensions that can be triggered by factors such as physical activity or exercise, prolonged cognitive activities, such as engaging in intense or online meetings or other health conditions.
Currently I have the opportunity to collaborate with a group of individuals in a CIHR-funded study to adapt this framework as a way to conceptualize the relapsing and remitting nature of some of the health-related challenges seen among people living with long COVID. Given the importance of terminology in providing clarity and understanding among community and health providers, we recommend the use of the term “episodic disability” to characterize these experiences.
Lesson number two is that uncertainty and worry about the future is a key feature of disability experienced among people living with long COVID. This is a disability, and there is uncertainty of when an episode might arise, the severity and duration of that episode and the impact it might have on one's health, finances and emotional health.
We're now dealing with the new uncertainty of what occurs in the case of a reinfection among someone living with long COVID. There is diagnostic uncertainty, where it can be difficult for an individual who did not have a positive PCR antigen test to access employment or income benefits or rehabilitation services. There's financial uncertainty about if, such as if, when and how individuals may be able to return to the workforce. Uncertainty is also [Inaudible--Editor] with health and rehabilitation providers in terms of how to safely approach, assess and treat individuals with long COVID. Lastly, there is uncertainty among employers and human resource professionals as to how best to accommodate and facilitate return to work.
Lesson three is that there are similarities among those living with HIV and long COVID relating to health inequities, stigma, and discrimination. We know that long COVID disproportionally affects females, individuals in their prime career-building years, those working in social care and education, and those with other existing activity limitations, conditions, or disabilities, which will have an impact and further compound the complexities of long COVID.
Lesson four is that the role and access to rehabilitation is critical to help prevent, address and mitigate disability, and to enhance health outcomes for individuals living with long COVID. Rehabilitation, such as physiotherapy and occupational therapy, can have a role in being goal-oriented, person-centred, and focused on function and tailored to an individual's goals and abilities.
Lesson five is the importance of ensuring there is a patient and community engaged rehabilitation response. In combination with this, there is the need to have greater meaningful involvement of people living with long COVID, who are people living with and affected by the pandemic. Building on existing research and clinical networks in rehabilitation can provide foundations for long COVID. Taking a strength-in-numbers approach and partnering with other chronic and episodic conditions, such as myalgic encephalomyelitis or chronic fatigue syndrome, will help to inform future rehabilitation approaches and policy.
In summary, a safe, effective, and coordinated response to rehabilitation is critical in the context of long COVID. While evidence continues to emerge, rehabilitation professionals are positioned to help address episodic disability. Opportunities exist to build on some of the successful disability and rehabilitation models from other chronic and episodic illnesses that may apply to the context of long COVID.
Thank you very much for your attention.