Effectively working with individuals experiencing long COVID (postacute sequelae of SARS-CoV-2) will require an approach that conceptualizes the condition as an "episodic disability" similar to disability patterns associated with HIV — but that's just the beginning of what needs to change, say authors of a recent commentary. The shift in perspective will also demand more customized outcome measures and require more reliance on rehab providers to grow the evidence base for treatment.
Authors of the commentary, published in BMJ Global Health, argue that it's crucial to establish a conceptual construct of disability "for better understanding the lived experiences and health-related challenges of people living with and affected by long COVID." Their opinion: Long COVID should be thought of as an "episodic health condition" that results in disability in multiple areas, with severity levels that rise and fall unpredictably.
While there is no completely accurate analog to the challenges of long COVID, authors believe the condition could be considered similar to what's experienced by individuals with HIV, "where health challenges can fluctuate daily or even over longer periods of time."
Given the similarities, they write, a good place to start is by way of the Episodic Disability Framework, a resource developed in Canada to better understand the nature of disability faced by people living with HIV. That framework includes dimensions of disability; intrinsic and extrinsic "contextual factors" such as supports, stigma, and personal qualities; and triggers that cause the condition to temporarily worsen. Those parameters strongly resemble the constellation of issues experienced by those with long COVID, making the framework an "ideal approach" for thinking about the condition.
Adapting the framework to reflect the lived experiences of those with long COVID would result in a conceptual foundation that opens up possibilities for outcome measures that capture the "full breadth and depth of episodic disability" — something that available measures don't do, they write. Measures such as the COVID-19 Yorkshire Rehabilitation Scale and the World Health Organization's Disability Assessment Schedule "do not capture the uncertainty dimension of disability (worrying about future health living with long COVID) and do not consider the potential fluctuating nature of disability over time," authors add.
A clearer concept of long COVID's disability environment and more targeted outcome measures will in turn help rehab providers refine their approach to people with long COVID, according to the commentary. The more informed rehab will help strengthen the evidence base for management of the condition.
"There is a critical need to assess the impact of rehabilitation interventions to reduce episodic disability and enhance health outcomes for people living with long COVID," authors write. "Development of a robust research agenda involving disability and rehabilitation will be important moving forward."