Find out more: Episodic Disability Questionnaire
Our trustee Dr Margaret O’Hara tells us more about the EDQ, and what was presented at the ISLC PAIS Conference in Amsterdam at the end of August.
I was pleased to attend the ISLC PAIS Conference in Amsterdam on behalf of Long COVID Support (UK) the Episodic Disability Study Team (Toronto University) & Rehabilitation Science Research Network for COVID.
What is the Episodic Disability Questionnaire?
The Episodic Disability Questionnaire (EDQ) is a patient reported outcome measure to measure the disability that results from Long Covid. It was co-developed by a collaboration between a team of over 25 people including academic clinicians and people with lived experience of Long Covid led by Prof Kelly O’Brien (Toronto University) and Darren Brown (Long Covid Physio (UK)). Aside from Long Covid Support it includes four other international patient-led Long Covid organisations (Long COVID Advocacy Ireland, Patient-Led Research Collaborative, Long COVID Physio and COVID Long Haulers Support Group Canada).
Kelly and Darren developed and applied the Episodic Disability Framework in the context of HIV and, having noted that Long Covid was itself a fluctuating and disabling condition, had the idea to adapt the framework to Long Covid. The Study Team was formed in 2021 and, from an initial grant award from the Canadian Institutes of Health Research, has been working together ever since. I was asked to join the team on behalf of Long Covid Support, the charity for which I’m a founding member and trustee.
What was presented
In Amsterdam, I gave an oral presentation and exhibited two posters, each of which highlighted different outputs from our collaboration.
The oral presentation on Thursday 27th Aug was titled “Assessing the Measurement Properties of the Episodic Disability Questionnaire (EDQ) with adults living with Long COVID in Canada, United Kingdom, Ireland, and United States”. It described how well the EDQ can reliably and consistently assess disability in adults with Long Covid, and how well it measures what we intended it to measure.
The first poster, titled “Community Engagement: Process, Evaluation and Recommendations from the Long COVID and Episodic Disability Study” describes the involvement of people living with Long Covid in the design and management of the research. People living with Long Covid were integrally involved in this work from before the first grant application was even submitted and we have continued to be equal partners in the development of the research.
I consider it to be one of the most truly meaningful and high-quality collaborations between academics and people with lived experience that I have ever been involved in. We have written about how we have conducted and evaluated the community engagement in our collaboration here.
What we did
The work of the collaboration over the last six years has explored the lived experience of Long Covid through a lens of its disabling nature and how this can fluctuate over short and long timescales. Our first paper interviewed participants to explore how they experience Long Covid. We asked them to draw how their Long Covid changes over time and the images give a visual impression of just how much of thoroughly debilitating roller-coaster it can be.
From there, we developed the questionnaire and pilot tested it in another group of participants. Our second poster (Disability among Adults Living with Long COVID in Canada, UK, Ireland, and USA: A Structural Equation Model Using the Episodic Disability Questionnaire) describes the measurement properties of the EDQ, showing that the components of uncertainty and physical and cognitive health challenges adversely influence day-to-day activities, mental and emotional health, and social inclusion.
Our work continues as we develop and evaluate the Episodic Disability Questionnaire for Long Covid both as a tool for research and to help those living with Long Covid to understand and manage their own condition.
I really enjoyed representing this excellent collaboration at Amsterdam and connecting with fantastic international researchers and patient groups.