High time to LISTEN: co-designing and evaluating self-management support with and for people living with long Covid

It seems that not a day goes by without my twitter feed bringing up yet more worrying symptoms of long Covid, adding to the already considerable list. Only today, I chance upon a new study highlighting the extent of kidney damage wrought by the disease, shared in the midst of a flurry of anxious tweets about other potential symptoms.

The figures, too, are unsettling. The ONS estimates 970,000 people in the UK are living with long Covid by August 2021, while a meta-analysis of data from more than a dozen countries find that nearly half of those ever testing positive for Covid-19 continued to experience symptoms 90 days after the onset of Covid or hospitalisation.

I scroll down my feed – a bitter-sweet moment: a Covid ‘long-hauler’ tells how they danced in a field, hugging a loved one under the stars as they celebrated two months without relapse. A glorious reclaiming of their life following 18 months of debilitating symptoms. Their physical heart has still not recovered, they throw in; but this doesn’t seem to matter much to the twitterer compared with the joy of that fleeting moment under the starry sky.

A ray of light: The number of studies on long Covid are increasing across the world, and the data on long Covid, declares an article in The Scientist, ‘are rolling in’. In the US, long-haulers have testified in front of Congress and been invited to advise the CDC and the WHO. An article in the Lancet further points to the rising profile of long Covid (‘a modern medical challenge’) while none other than the director-general of the WHO calls on countries worldwide to prioritise recognition, rehabilitation and research into the long-term consequences of Covid-19.  On the twitter feed, meanwhile, the hashtag #longCovid is trending – that is, long Covid is becoming a popular topic on twitter by early September 2021.

But then comes another crash: in spite of all the attention, scepticism about the condition is still widespread – an admin for a Covid support group comments on their daily practice of deleting abusive comments from the group’s page and inbox: ‘an average day’, they say. One sufferer of another chronic condition urges Covid long-haulers to fight to be heard before impoverishment and disability reduces them to keyboard activism.  The expressions of gratitude from Covid long-haulers for articles validating their experiences, such as Ed Yong’s recent piece in The Atlantic, also speak volumes about the sense of being disbelieved, still, well over a year after the term ‘long Covid’ was first coined.

So what might be the take-away from this snapshot of the world of #longCovid? One: the day to day lives of Covid long-haulers is still marred by uncertainty, fluctuation and inconsistency as Summer 2021 turns to Autumn. Two: we, meaning the healthcare community, cannot act fast enough in relation to long Covid. Another: people with experience of long-Covid have developed considerable expertise on their condition; they have organised and mobilised, they have already had an important influence on research; and they can and must be fully involved in solutions to help improve their lives.

And solutions are what many living with long Covid are now after. There are few, however – or at least, as of September 2021, we are still waiting for definitive evidence that a given intervention works.

It is difficult to know where to start. From our experience as healthcare researchers, though, we know that personalised self-management support interventions can be highly effective in improving outcomes for people living with complex long-term conditions. Interventions that accommodate heterogeneity and individualised treatment plans have also been advocated by long Covid patient groups. And so, against the urgency and the many unknowns still surrounding long-Covid, we are launching the Long Covid Personalised Self-managemenT support- co-design and EvaluatioN research project – LISTEN for short.

What is LISTEN?

LISTEN is a two-year research study, jointly led by Professor Fiona Jones of Kingston University and St George’s, University of London, and Professor Monica Busse of Cardiff University. The project aims specifically to work in partnership with individuals living with long Covid in order to co-design, co-deliver, and evaluate a personalised self-management support intervention. It will focus on people who were not hospitalised for Covid, and living in England or Wales. We also hope to reach people whose voices are not often heard in discussions around long Covid, such as people from black, Asian and minority ethnic groups or people with disabilities, and yet have been among the hardest hit during the pandemic.

LISTEN has several phases. In the first phase, we will reach out through various organisations, long Covid support groups and social media, to find people living with or recovered from long Covid who are interested in joining the study. We’ll invite interested people to take part in a series of online meetings, to discuss examples of self-management resources developed for other conditions, and also to co-create some new resources specifically for people with long Covid. They will list their priorities for the contents, produce audio or written narratives based on their experiences, or take part in filmed interviews. At this stage, people will also have a say in what the training for rehabilitation practitioners should look like.

The second phase of the study will be a large randomised trial. For the trial, we will recruit around 558 adults living with long Covid in England or Wales, and who were not hospitalised for Covid. Half of these people will receive the usual care for long Covid, that is, we will direct them to their local NHS specialist clinics or the My Covid Recovery app – whichever is the standard care in their area at the time. The other half will receive the new, co-designed, LISTEN resources, and also up to six coaching sessions from the trained rehabilitation practitioners. We will then test what difference the LISTEN intervention makes; whether it has had a positive impact on how the people recruited feel and cope with every day activities.

Another important question for us will be how cost-effective the LISTEN intervention is. We will record expenses and loss of work from long Covid and work out the impact of LISTEN on people and society. We will also want to know what service users and the practitioners thought of the intervention – particularly, how appropriate, acceptable and feasible they felt the LISTEN intervention was in the real world. If there were barriers – what were they? What helped? Maybe there were factors within community teams and the wider health service environment that affected the implementation of the intervention; and maybe practitioners had to make modifications to how they delivered the intervention. We will try to shed light on all of these. For this, we will hold research interviews and focus groups with people who took part in the trial, both people with long Covid and rehabilitation practitioners. Ultimately, this will help us identify how best to roll out the intervention across communities, if, that is, we can show that the intervention makes a difference to people living with long Covid and is cost-effective.

You might wonder how we will avoid being biased by the findings of the trial when we conduct these interviews and focus groups – and whether we have any vested interests in this project. The answer to the first question is, we will avoid bias by running all of these interviews and focus groups before we get the results from the trial. And the answer to the second question is, quite simply, no.  We are a large team of academic researchers, and our purpose is primarily to advance knowledge and practice, and ultimately to make a difference to those living with long Covid – among whom we already count some members of our research team. We are also only too aware that long Covid could affect any one of us in the future.

Who is involved?

The project is being funded by the National Institute for Health Research (NIHR) under their Long Covid funding stream.  Our research team includes a wide range of experts from several institutions, namely: Kingston University and St George’s, University of London, Cardiff University, Swansea University, Lincoln University, King’s College London, Bridges Self-Management, St George’s Healthcare NHS Trust, and the PRIME Centre in Wales. In addition, we have set up an advisory group of people with long Covid to guide us as we go through the project, and a steering committee which also includes people with long Covid experience.

So it is with much hope, and feeling well supported, that we are setting off on this two-year journey.

We will keep everyone interested in the project regularly updated – either here, to report on important developments or results, or on twitter — for shorter, snappier communications about our progress. Our twitter handle is @TheLISTENproj.

In addition, if you have questions about this project, you can type these in the comments box below, and we will try to respond as soon and as fully as we can.

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A final note about me, the author of this blog: I am currently a research fellow in the Centre for Applied Health and Social Care Research at Kingston University and St George’s, University of London. As a researcher, I am thrilled to be working with the very experienced and knowledgeable team of LISTEN and the many organisations and support groups of people living with long Covid; and, as a human being, I am humbled and exhilarated to be (however small) a part of the unfolding story of long Covid, as it moves from obscurity towards solutions.