Long COVID and Episodic Disability: Advancing the Conceptualization, Measurement and Knowledge of Episodic Disability with people living with Long COVID

Our goal 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 (PROM) to assess the presence, severity and episodic nature of disability among people living with Long COVID. Standardized PROMs that capture disability and its fluctuation over time are critical to guide timely and appropriate Long COVID care. In earlier work, we developed and validated the Episodic Disability (ED) Framework in the context of HIV, and established a PROM to capture episodic disability across 6 domains: physical, cognitive, mental-emotional health, daily activities, uncertainty about the future, and social inclusion. This tool possesses reliability and validity among adults living with HIV internationally. 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. In Phase 1 of this study, we 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, we will establish an Episodic Disability Questionnaire and assess its measurement properties for use with Long COVID. This study builds on our work in episodic disability among an international team with expertise in episodic illness, measurement, COVID-19, and rehabilitation. Findings will yield the first known conceptual framework and PROM developed to assess the prevalence and impact of episodic disability in Long COVID. Future universal measurement of disability may assist with clinical management, tracking of episodic disability trends, and evaluating interventions for people living with Long COVID.