Research Funded on Long COVID and Episodic Disability.

Kelly O’Brien, Darren Brown, Colm Bergin, Kristine Erlandson, Jaime Vera, Lisa Avery, Soo Chan Carusone, Richard Harding, Larry Robinson, Patty Solomon, Angela Cheung, Hannah Davis, Patriic Gayle, Susie Goulding, Margaret O’Hara, Catherine Thompson.

CIHR Operating Grant: Emerging COVID-19 Research Gaps and Priorities Funding Opportunity

The goal of this study is to characterize the disability experiences among people living with Long COVID in Canada, UK, United States, and Ireland; and to develop and assess the properties of a patient-reported outcome measure to assess the presence, severity and episodic nature of disability among people living with Long COVID.  As the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. The multidimensional and fluctuating nature of Long COVID may be similar to other episodic illnesses such as HIV, highlighting an opportunity to apply lessons learned in the context of Long COVID.

This study builds on the team’s earlier work, involving the development and validation of the Episodic Disability (ED) Framework in the context of HIV, and development of a patient-reported outcome measure to assess episodic disability across 6 domains: physical, cognitive, and mental-emotional health, daily activities, uncertainty about the future, and social inclusion. In Phase 1, the team will conduct a series of interviews to explore experiences of disability (dimensions, influencing factors, triggers) and extent to which the ED Framework applies to living with Long COVID. In Phase 2, the team will establish an Episodic Disability Questionnaire and assess its measurement properties for use with Long COVID. This study involves an international multi-stakeholder team with expertise in episodic illness, measurement, COVID-19, and rehabilitation. Findings will yield the first known conceptual framework and patient-reported outcome measure developed to assess the prevalence and impact of episodic disability in Long COVID.   

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