Authors of a recent commentary published in BMJ Global Health say that it’s critical to create a theoretical model of disability to better understand “the lived experiences and health-related challenges of people living with and affected by long COVID.” The disability model, they say, should reflect the condition’s episodic pattern, which is similar to that of HIV/AIDS.

Similarities and Differences

While symptoms of the two differ, the authors clarify, both conditions demonstrate an “ebb-and-flow disability pattern” that needs to be taken into account. Long COVID can lead to disabling symptoms in diverse areas, with fluctuating–and unpredictable–degrees of severity. 

In addition, while we still have much to learn about long COVID, the current cumulative evidence suggests that, like HIV, long COVID’s resulting health challenges can see-saw daily, weekly, or over longer time frames. 

Episodic Disability Framework

Given these similarities, the authors suggest using the Episodic Disability Framework as a starting point for the long-COVID model. The Framework is a tool that was developed in Canada to better understand the nature of disability faced by people living with HIV. It consists of three main parts:

• Dimensions of disability 
• Intrinsic and extrinsic ‘contextual factors’ such as:
  • Supports 
  • Stigma 
  • Personal qualities 
• Triggers that cause the condition to temporarily worsen 

Assessment tools such as the COVID-19 Yorkshire Rehabilitation Scale and the World Health Organization’s Disability Assessment Schedule fail to capture the dimension of uncertainty (regarding future physical, cognitive, social, and financial wellbeing), write the authors, nor do they factor in “the potential fluctuating nature of disability over time.” The Episodic Disability Framework could help close these gaps.

How a Conceptual Framework Can Help

A structured, more clear-cut concept of long COVID’s disability dynamics, along with more focused outcome measures, can help: 

• Rehabilitation therapists refine their approach to people with long COVID
• Strengthen the evidence base for multiple symptom management 
• Demonstrate the need for more customized outcome measures 

“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,” said the authors. “Development of a robust research agenda involving disability and rehabilitation will be important moving forward.”

*American Physical Therapy Association. (2021, Oct. 1). Conceptualizing Long COVID Disability: Similar to HIV-Related Disability?  https://www.apta.org/news/2021/10/01/long-covid-disability

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.