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

Sensibility of the Episodic Disability Questionnaire among adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Sensibility of the Episodic Disability Questionnaire among adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States Julia Nathanson, Kiera McDuff, Darren A. Brown, Soo Chan Carusone, and 23 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9261032/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version 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. Patient-reported outcome measures Long COVID Episodic Disability Sensibility Full Text Additional Declarations No competing interests reported. Supplementary Files AdditionalFile1FINALSUBMITTEDMar2926.pdf AdditionalFile2FINALSUBMITTEDMar2926.pdf Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9261032","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":620525504,"identity":"8eea547a-e9ba-4a3a-909d-20b0237bc1cc","order_by":0,"name":"Julia Nathanson","email":"","orcid":"","institution":"University of Toronto","correspondingAuthor":false,"prefix":"","firstName":"Julia","middleName":"","lastName":"Nathanson","suffix":""},{"id":620525507,"identity":"a4688bc7-ef7d-47e6-96bd-3da4c37370f2","order_by":1,"name":"Kiera McDuff","email":"","orcid":"","institution":"University of Toronto","correspondingAuthor":false,"prefix":"","firstName":"Kiera","middleName":"","lastName":"McDuff","suffix":""},{"id":620525510,"identity":"ac8d3a28-7752-4ec4-b894-047927aa4b66","order_by":2,"name":"Darren A. 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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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethodology:\u003c/strong\u003e 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e 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 \u003cu\u003e\u0026gt;\u003c/u\u003e5/7 for 16/18 (89%) items on the sensibility questionnaire.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003eThe 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.\u003c/p\u003e","manuscriptTitle":"Sensibility of the Episodic Disability Questionnaire among adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-14 22:54:47","doi":"10.21203/rs.3.rs-9261032/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"4f677d54-3053-44ce-ba2f-143fe5d83db4","owner":[],"postedDate":"April 14th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-04-14T22:54:47+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-14 22:54:47","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9261032","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9261032","identity":"rs-9261032","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}