Sensibility of the Episodic Disability Questionnaire among adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States

Abstract Background Persons living with Long COVID experience a range of health-related challenges that may fluctuate over time, known as episodic disability. The Episodic Disability Questionnaire (EDQ) is a 35-item patient-reported outcome measure developed to assess presence, severity and episodic nature of disability across six dimensions: (i) physical, (ii) cognitive, (iii) mental-emotional health, (iv) difficulties with day-to-day activities, (v) social inclusion, and (vi) uncertainty about future health. Our aim was to assess the sensibility of the EDQ among adults living with Long COVID. Methodology We conducted a two-phased sensibility assessment of the EDQ. In Phase 1, we assessed the face and content validity of the EDQ by mapping items from the EDQ onto the Episodic Disability Framework, which conceptualizes the health-related challenges living with Long COVID. Using the framework, we developed a 21-item Long COVID EDQ Supplement (LC-EDQ Supplement) for use in conjunction with the EDQ. In Phase 2, we conducted a cross-sectional measurement study involving adults living with Long COVID in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ and LC-EDQ Supplement, followed by an 18-item sensibility questionnaire to assess face and content validity, ease of usage and format. Sensibility scores ranged from 1 (highly disagree) to 7 (highly agree). We considered the EDQ and the LC-EDQ Supplement sensible if median sensibility item scores were ≥ 5/7 for ≥ 80% of items and if none of the items had a median score of ≤ 3/7. Results Of the 798 participants, most identified as female (82%), median age of 47 years (25th,75th percentile: 37, 56), and median of 2 years (1, 3) living with Long COVID. The EDQ and LC-EDQ Supplement met the criterion for sensibility as determined by sensibility item responses ≥ 5/7 for 16/18 (89%) items on the sensibility questionnaire. Conclusions The EDQ and LC-EDQ Supplement demonstrated sensibility among this sample of adults living with Long COVID. Results highlight the EDQ as a practical and feasible tool to assess the multi-dimensional and episodic nature of disability experienced among adults living with Long COVID.