Long COVID and Episodic Disability Study

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

Background

As the prevalence of Long COVID increases, more individuals are living with ongoing physical, mental and social health challenges after COVID-19 infection, known as disability. Questionnaires designed to capture this disability are important for health providers to understand the disability experienced so that they can provide care. Our research team has previously developed questionnaires in the context of adults living with HIV in Canada, US, Ireland and UK. This study builds on this work to apply lessons learned in other chronic and episodic conditions to understand and conceptualize disability experienced among adults living with Long COVID.

What is the purpose of this research study?

The purpose of this study is to gain a better understanding of the disability experiences among people living with Long COVID, to develop the Episodic Disability Questionnaire (EDQ), and assess how well this questionnaire can measure disability in people living with Long COVID.

Our specific aims are:

To conceptualise the disability experiences (dimensions, trajectories, contextual factors and triggers that exacerbate or alleviate disability over time) among people living with Long COVID in Canada, UK, USA and Ireland, and to establish the Episodic Disability Framework in the context of Long COVID; and
To develop and assess the measurement properties of an Episodic Disability Questionnaire (EDQ) while collecting foundational data on the presence, severity and episodic nature of disability and contextual factors (sex, gender, race, age, comorbidity, country) that may influence disability among adults living with Long COVID in Canada, UK, USA and Ireland.

This research is a collaboration between researchers in Canada, United Kingdom (UK), United States (US), and Ireland.

What are the study methods?

This is a mixed methods study involving qualitative (aim 1) and quantitative measurement (aim 2) approaches with adults living with Long COVID in Canada, UK, USA and Ireland. In phase 1, we conducted semi-structured interviews with adults living with Long COVID to explore experiences of disability and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test–retest) of the EDQ for use in Long COVID.

This research involves an international community–academic–clinical partnership building on foundational work in episodic disability among an international team with expertise in episodic illness, disability, measurement, COVID-19, Long COVID and rehabilitation.

For more details on this study

O'Brien KK, Brown DA, Bergin C, et al. 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. BMJ Open 2022;12:e060826. doi: 10.1136/bmjopen-2022-060826 https://bmjopen.bmj.com/content/12/3/e060826

How can I get a summary of the research study results?

Updates on the Long COVID and Episodic Disability study and publications will be openly available on the Long COVID Physio website: https://longcovid.physio.

Publications

Click here to see them.

O'Brien KK, Brown DA, Bergin C, et al. 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. BMJ Open 2022;12:e060826. doi: 10.1136/bmjopen-2022-060826 https://bmjopen.bmj.com/content/12/3/e060826
Brown DA, O’Brien KK. Conceptualising Long COVID as an Episodic Health Condition. BMJ Global Health. 2021;6:e007004. doi:10.1136/bmjgh-2021-007004. https://doi.org/10.1136/bmjgh-2021-007004.
Brown DA, O’Brien KK, Josh J, Nixon SA, Hanass-Hancock J, Galantino ML, Myezwa H, Fillipas S, Bergin C, Baxter L, Binette M, Chetty V, Cobbing S, Corbett C, Ibanez-Carrasco F, Kietrys D, Roos R, Solomon P, Harding R. Six Lessons for COVID-19 Rehabilitation From HIV Rehabilitation, Physical Therapy. Volume 100, Issue 11, November 2020, Pages 1906–1909. https://doi.org/10.1093/ptj/pzaa142

People

The team conducting this study includes people living with Long COVID, people affiliated with COVID support networks, and researchers and clinicians working in COVID-19 care in Canada, US, Ireland, and UK. This study involves participants living with Long COVID in all four countries. University of Toronto (Canada) is the primary site of the study.

Research Team

Kelly O’Brien, Department of Physical Therapy, University of Toronto
Darren Brown, Chelsea and Westminster Hospital NHS Trust
Colm Bergin, St James’s Hospital, Dublin, Ireland
Kristine Erlandson, University of Colorado Denver
Jaime Vera, Brighton and Sussex Medical School, University of Sussex Brighton, Brighton, UK
Lisa Avery, Dalla Lana School of Public Health, University of Toronto
Soo Chan Carusone, McMaster University
Angela M. Cheung, University Health Network, University of Toronto
Richard Harding, King’s College London, Cicely Saunders Institute, London, United Kingdom
Larry Robinson, Sunnybrook Health Sciences Centre
Patricia Solomon, McMaster University
Ciaran Bannan, St James’s Hospital, Dublin, Ireland

Community Collaborators

Long COVID Support, UK - Margaret O’Hara
COVID Long Haulers Support Group of Canada - Susie Goulding
Long COVID Ireland – Niamh Roche, Ruth Stokes
Patient-Led Research Collaborative - Hannah Davis, Lisa McCorkell, Hannah Wei
Long COVID Physio - Catherine Thomson, Darren Brown, Kelly O’Brien
Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC) - Patriic Gayle

Coordinator Team

Kiera McDuff, PT, Research Coordinator, University of Toronto
Natalie St. Clair-Sullivan, PT, Royal Sussex County Hospital, Brighton and Sussex University Hospitals NHS Foundation Trust, Brighton, UK

Acknowledgements

We thank the Knowledge Users and Community Collaborator Organizations in this work. Kelly O’Brien is supported by a Canada Research Chair in Episodic Disability and Rehabilitation (Canada Research Chairs Program). We thank the Long COVID and Episodic Disability Study participants.

Funding

This work is funded by the Canadian Institutes of Health Research (CIHR), Emerging COVID-19 Research Gaps and Priorities Funding Opportunity (Funding Research Number #: GA4-177753).