ArticleBMJ open2022
Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID - protocol for a mixed-methods study.
Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed.
- Trial
- Battling the Bots and Defending Against Fraudulent Responses in an International Community-Engaged Web-Based Survey With People Living With Long COVID: Methodological Study.Journal of medical Internet research · 2026Article
- Community Engagement in Long Covid Research: Process, Evaluation and Recommendations From the Long COVID and Episodic Disability Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- 'We Don't Have to Prove to People How We're Feeling': Understanding the Role of Peer Support Groups in Countering Epistemic Injustices in Long COVID at a US Centre.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Profiling the persistent and episodic nature of long COVID symptoms and the impact on quality of life and functional status: a cohort observation study.Journal of global health · 2025Observational
- Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study.PloS one · 2025Article
- Exploring social determinants of health and their impacts on self-reported quality of life in long COVID-19 patients.Scientific reports · 2024Article
- Experiences of physiotherapists working with adults living with Long COVID in Canada: a qualitative study.BMJ open · 2024Article
- Long COVID Is Not a Functional Neurologic Disorder.Journal of personalized medicine · 2024Review
- Episodic disability questionnaire (EDQ) measurement properties among adults living with HIV in Canada, Ireland, United Kingdom, and United States.BMC infectious diseases · 2024Article
- Leveraging and learning from the long COVID experience: Translating telerehabilitation into practice.Work (Reading, Mass.) · 2024Article
- "None of us are lying": an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID.BMC health services research · 2023Article
- Review
- Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study.BMJ global health · 2023Article
- Patient experiences with SARS-CoV-2: Associations between patient experience of disease and coping profiles.PloS one · 2023Article
- Scoping review of rehabilitation care models for post COVID-19 condition.Bulletin of the World Health Organization · 2022Article
- The potential role of ischaemia-reperfusion injury in chronic, relapsing diseases such as rheumatoid arthritis, Long COVID, and ME/CFS: evidence, mechanisms, and therapeutic implications.The Biochemical journal · 2022Review
Corrections and comments
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Authors and funding
22 authors.
Funding
Abstract
introductionAs the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID. METHODS AND ANALYSIS: In phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test-retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach's alphas (internal consistency reliability), and intraclass correlation coefficients (test-retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic-clinical-community partnership building on foundational work in ED measurement, Long COVID and rehabilitation. ETHICS AND DISSEMINATION: This study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.
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