Article Text

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
  1. Kelly K O'Brien1,2,3,4,
  2. Darren A Brown5,6,
  3. Colm Bergin7,8,
  4. Kristine M Erlandson9,
  5. Jaime H Vera10,11,
  6. Lisa Avery12,13,
  7. Soo Chan Carusone14,
  8. Angela M Cheung2,12,15,
  9. Susie Goulding16,
  10. Richard Harding17,
  11. Lisa McCorkell18,
  12. Margaret O'Hara19,
  13. Larry Robinson20,
  14. Catherine Thomson6,
  15. Hannah Wei21,
  16. Natalie St Clair-Sullivan11,
  17. Brittany Torres1,
  18. Ciaran Bannan7,8,
  19. Niamh Roche22,
  20. Ruth Stokes22,
  21. Patriic Gayle23,
  22. Patricia Solomon24
  1. 1Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
  2. 2Institute of Health Policy, Management and Evaluation (IHPME), Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
  3. 3Rehabiltation Sciences Institute (RSI), University of Toronto, Toronto, Ontario, Canada
  4. 4Long COVID Physio, Toronto, Ontario, Canada
  5. 5Therapies Department, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
  6. 6Long COVID Physio, London, UK
  7. 7Department of Genitourinary and Infectious Diseases (GUIDE Clinic), St. James's Hospital, Dublin, Ireland
  8. 8Trinity College Dublin, School of Medicine, Dublin, Ireland
  9. 9University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA
  10. 10Brighton and Sussex Medical School, University of Sussex Brighton, Brighton, UK
  11. 11Royal Sussex County Hospital, Brighton and Sussex University Hospitals NHS Foundation Trust, Brighton, UK
  12. 12University Health Network, Toronto, Ontario, Canada
  13. 13Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
  14. 14McMaster Collaborative for Health and Aging, McMaster University, Hamilton, Ontario, Canada
  15. 15Department of Medicine, University of Toronto, Toronto, Ontario, Canada
  16. 16COVID Long-Haulers Support Group Canada, Toronto, Ontario, Canada
  17. 17Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK
  18. 18Patient-Led Research Collaborative, Washington, DC, USA
  19. 19Long COVID Support, Birmingham, UK
  20. 20Sunnybrook Health Sciences Centre, Sunnybrook Research Institute, Toronto, Ontario, Canada
  21. 21Patient-Led Research Collaborative, Ottawa, Ontario, Canada
  22. 22Long COVID Ireland, Dublin, Ireland
  23. 23Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), London, UK
  24. 24School of Rehabilitation Science, McMaster University Faculty of Health Sciences, Hamilton, Ontario, Canada
  1. Correspondence to Dr Kelly K O'Brien; kelly.obrien{at}


Introduction As 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.

  • COVID-19
  • rehabilitation medicine
  • HIV & AIDS
  • infectious diseases

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  • Twitter @kellyobrien25, @darrenabrown, @kerlands, @RHardingCSI, @longcovidirl

  • KKO and DAB contributed equally.

  • Correction notice This article has been corrected since it was first published. The figure has been updated.

  • Contributors KKO'B and DAB co-led the conceptualisation of the study objectives, and drafted the protocol, lead the application for acquisition of funding and are the co-lead investigators on the study. KKO'B, DAB, JV, CBe and KME, JV are coprincipal investigators and country leads on the research team, and were involved in the conceptualisation of the study design, development of the protocol and acquisition of funding. LA, SCC, AC, LR, RH and PS are coinvestigators and were involved in the conceptualisation of the study design and contributed to the development of the protocol, and acquisition of funding. SG, LM, MO'H, CT, HW, RS and NR are collaborators and community experts in the Long COVID community who were involved in the review and refinement of the protocol. They are members of the Community Advisory Committee and will lead recruitment of participants and community-integrated knowledge translation. PG is a community collaborator and knowledge translation expert who will be involved in the knowledge translation. NSC-S and BT are research coordinators involved in the recruitment and data collection and contributed to the refinement of the protocol. CBa is a clinician working in Long COVID and coinvestigator who recently joined the team and who reviewed of the protocol. All authors read and approved the final protocol manuscript.

  • Funding This work is supported by the Canadian Institutes of Health Research (CIHR), Emerging COVID-19 Research Gaps and Priorities Funding Opportunity (Funding Research Number #: GA4-177753), 160 Elgin Street, Ottawa, Ontario, Canada, K1A 0W9). KKO’B is supported by a Tier 2 Canada Research Chair in Episodic Disability and Rehabilitation and AC is supported by a Tier 1 Canada Research Chair in Musculoskeletal and Postmenopausal Health from the Canada Research Chairs Programme.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; peer reviewed for ethical and funding approval prior to submission.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.