Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability..., 2022, O'Brien et al

Andy

Andy

Retired committee member
Full title: 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

Abstract

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.

Open access, https://bmjopen.bmj.com/content/12/3/e060826
 
seems like some one wants to create a new system to deny any benefits to people with fluctuating health conditions . having a few relatively less awful days does not mean society is going to magically make you employable .
 
Darren Brown is involved, he's been a good advocate for Long Covid and has acknowledged the contribution people with ME/CFS can make to understanding Long Covid. He has/had Long Covid himself.

I haven't read the paper yet, but I'd be surprised if the intent of this new Episodic Disability Questionnaire was bad. I think most attempts at quantifying disability are hopeless at recognising the particular problems created by fluctuating and uncertain abilities/disabilities, so this measure might be helpful.
 
Hutan said:
Darren Brown is involved, he's been a good advocate for Long Covid and has acknowledged the contribution people with ME/CFS can make to understanding Long Covid. He has/had Long Covid himself.

I haven't read the paper yet, but I'd be surprised if the intent of this new Episodic Disability Questionnaire was bad. I think most attempts at quantifying disability are hopeless at recognising the particular problems created by fluctuating and uncertain abilities/disabilities, so this measure might be helpful.
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Yup. And another long hauler who was involved in the Body Politic papers. Also the unofficial expert on Long Covid in Canada, Cheung, who seemed to have learned well enough about it, understands the relation to ME.

Although I'm not sure of the necessity of creating new language about episodic something, there's already existing language that works fine in relapsing-remitting. It's commonly used and applies well here. Especially as for many pwLC and pwME, it's not episodic or relapsing-remitting, it's just on all the time. So this language may obscure the fact that it's not just good days and bad days, many have not had a single "good day" from day 1.

And that's also true long term, I haven't had a good day in years. This is not necessarily episodic and it's crucial to be mindful of how the language can be misused, it's almost guaranteed to be.
 
As such, it is imperative to conceptualise disability in Long COVID and to establish tools to accurately measure disability to inform timely and appropriate access to rehabilitation approaches, and inform policies that consider the complexities of Long COVID.16 31 32

Long COVID is multidimensional, episodic and unpredictable, characterised by ‘clusters of symptoms’ that can overlap and ‘fluctuate and change over time’, described as ‘prolonged’, ‘relapsing and remitting’.3 17 33–38 These characteristics resemble episodic disability (ED), a concept derived from the context of HIV, where health challenges can fluctuate daily or over longer periods of time.39 40 There is an opportunity to apply lessons learnt in other chronic and episodic illnesses to understand and conceptualise the disability experienced among adults living with Long COVID.
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Standardised patient-reported outcome measures (PROMs) designed to capture the nature and extent of disability and its fluctuation over time are critical to guide the provision of care, determine the effectiveness of interventions, and inform workplace policies, benefits and access to services for people with Long COVID.
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It looks as though the expectation is that rehabilitation will help - which is arguable, although probably true for some in the heterogenous bucket that is Long Covid. But, at least they seem to recognise that you need a good measure of disability, among other things, in order to assess whether rehabilitation approaches help.

They are bringing ideas developed when working with HIV to Long Covid.
 
We will recruit adults living with Long COVID from Canada, UK, USA and Ireland via community networks.
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Interested individuals will contact the research coordinator for more information.
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An opportunity for people with Long Covid to be involved - although they are only aiming to recruit 40 people (10 in each country). That seems a bit light given the extensive range of patient characteristics they hope to sample.


Good involvement of patient organisations
Community experts/collaborators on the team will lead recruitment as they are best positioned to identify individuals from the community who they identify as representing different characteristics (or combinations of characteristics). We will recruit for diversity in characteristics such as age, sex, gender, race, geographical setting (urban vs rural), employment/student status, socioeconomic status, hospitalisation and country, as able.
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Collaborators, Long COVID Support (UK),58 COVID Long-Haulers Support Group Canada,57 Patient-Led Research Collaborative (US),60 Long COVID Physio,59 Long COVID Ireland61 and Canada-International HIV and Rehabilitation Research Collaborative97 98 will further leverage integrated knowledge translation.
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It's good that they are also collecting data using currently used tools, but I'm not sure why they aren't re-testing these other measures, as well as the EDQ. Surely re-testing might show the utility of the EDQ in capturing fluctuations in disability that these other measures don't?
We will electronically administer the Episodic Disability Questionnaire (EDQ) followed by four criterion measures currently used in Long COVID: WHO Disability Assessment Schedule,45 COVID-19 Yorkshire Rehabilitation Scale (C19-YRS)46; EuroQol- EQ-5D-5L quality of life questionnaire,64 Work and Social Adjustment Scale (WSAS)65 using e-survey software (Qualtrics) at Time 1.66 The EDQ (only) will be readministered electronically a second time, 1 week later (time 2). At time 2, we will ask participants whether they had any major changes in their health since Time 1 (to indicate consistency in disability for reliability assessment of the EDQ)
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I also think that it's a shame they aren't asking participants to self-assess against an ME/CFS diagnostic criteria e.g. IOM so that results can be stratified according to whether someone potentially has ME/CFS and/or other issues, like lung damage.
 
Ramsay spoke about ME as a disease defined by variability over hours, days weeks and months. I felt that longcovid was like ME because they were describing the same variability.

It is not the same as relapsing/remitting where it goes away for a while and comes back. I can have a very painful shoulder in the morning, be unable to speak a few hours later and feel nauseous for a while in the evening.

This was used against us. One of the wessely crew said that if a symptom disappeared it meant there was no reason why it could not go away forever.

It is one reason why mild ME is not really mild. These patients can be unable to get out of bed for a few days or be able to keep on working if they do nothing else; effectively housebound at those times.

Then PEM makes everything unpredictable as well. (The very severe are so bad that it is hard for them to have varying symptoms.)

MS is different. It gets worse gets better but the timescale is bigger than for us.
 
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