First personalized support trial to revamp long COVID care

Researchers at St Georges, University of London and Cardiff University are calling people to join the first support trial of its kind which will provide personalized care to people living with long COVID.

Long COVID continues to have a devastating impact on people's lives, affecting an estimated two million people in the UK alone, including front-line healthcare professionals who cared for the public during the COVID-19 pandemic.

Recent research has confirmed what many people with long COVID have been saying—that the condition is fluctuating and unpredictable in nature. It is associated with a myriad of symptoms from cognitive difficulties to extreme fatigue, from shortness of breath to dizziness.

People with the condition don't fall into one box and so a complete rethink in how long COVID is managed on an individual basis is vital.

To compound that, not everyone in the UK has access to the same level of support. Some people will be referred to long COVID clinics, group sessions, one-to-ones and/or rehabilitation in their local area, whereas others may not have access to any services.

Now, the researchers leading the LISTEN trial hope that the study will be a major step forward in providing much needed personalized support to people with long COVID and to push for a change in NHS guidelines so everyone in the UK has access to effective care.

Professor Fiona Jones, co-chief investigator of the LISTEN trial at St George's, University of London said, "People living with long COVID don't recover in the same way we'd expect compared to most infectious diseases. This gap in understanding has led to a tsunami of complications. The majority of those battling the often-debilitating condition don't feel supported or believed by healthcare professionals, with some misdiagnosed with depression or other conditions, feeling isolated and a loss of identity, all while facing an unpredictable recovery.

"We want people living with long COVID to feel heard and supported, and so we've drawn on lived experiences to tailor this trial. We hope the results will drive the NHS to change the way long COVID is treated and cared for."

Professor Monica Busse, co-chief investigator of the LISTEN trial at Cardiff University said, "Finding effective treatments for such people living with complex and variable conditions such as long COVID is challenging. Even when new treatments do emerge, they may not target each of the many long COVID symptoms. The real value in the LISTEN intervention is its focus on the stories and learning of those who have navigated their own pathway to recovery in the absence of established cures".

The LISTEN trial will recruit over 500 people living with long COVID across the UK, thanks to funding from the National Institute for Health Research (NIHR) and in collaboration with Cardiff and Kingston University. It will evaluate the effectiveness of a new personalized program which aims to support people living with long COVID to manage their every day.

Upon joining the trial, people with long COVID will randomly be assigned to receive usual NHS care or receive support provided by the LISTEN intervention. People in the intervention group will receive up to six remote one-to-one sessions with one of the 50 LISTEN trained practitioners, as well as a LISTEN handbook.

This unique trial was co-designed by 30 people living with long COVID who shared their lived experiences, what has worked for them in their path to recovery, their priorities and ideas. They worked with researchers to shape the training for the LISTEN practitioners who will conduct the one-to-one sessions, and to design the trial handbook which offers personal stories, advice and highlights the strategies that have helped them to manage the condition.

The trial is open to people aged 18+ years of age who were not hospitalized with COVID-19, who have consulted their GP, and who have been experiencing symptoms for longer than 12 weeks. Common symptoms can include, but are not limited to, fatigue, shortness of breath, and cognitive difficulties.

People living with long COVID can sign-up to the LISTEN trial by visiting www.listentrial.co.uk.

Case study

Carol Rowe, 56, from Claygate in Surrey caught COVID-19 in March 2020, just before the first lockdown. She thought she had recovered but first sensed something was wrong a couple months later when her stomach symptoms returned. While wearing her Fitbit at night, she realized her heart rate was at the equivalent of a cardio session. She also started to experience extreme fatigue and cognitive issues. Six months later, it was clear that her symptoms were not getting any better.

Carol said, "I was in the middle of a supermarket and suddenly felt like I had done too much. I hit a wall and felt like I couldn't go on. I went home and went to bed—that was basically me for the next few months."

Carol was a children's Speech and Language Therapist but had no choice but to retire. Carol added: "I felt like I lost many parts of my identity. I had a job I loved and a great social life but life is very different now. Fatigue is my biggest daily challenge. I find I'm not as articulate as I was, my memory and concentration are not as good as before, and I'm incredibly sensitive to noise."

There's a lack of understanding around long COVID and that many people have not felt heard by healthcare professionals. "I was reading of cases where long COVID was linked to stomach and heart complications and so I presented that to my GP. I was just being told 'no'—'no, you're menopausal', 'no you're depressed, 'no, you're unfit'. I felt like I was being dismissed."

Carol explains how there's a lot of guilt attached to having long COVID. Carol said, "People want to put COVID behind them, but you're an uncomfortable reminder that COVID and its impact are still ongoing."

"Despite all these challenges I've discovered what small steps work for me. My long COVID recovery is uncertain, but I strive to make 'this life' the best it can be and turn to new joys. I've adapted the way I garden and I've taken up new hobbies including crocheting. It has done my mental health the world of good."

Carol used her experience of long COVID and navigating support to help co-design the LISTEN trial. Carol said, "Working with others on the design of the trial and hearing their long COVID experiences has been incredibly rewarding—I finally feel heard and my experiences validated."

"A lot of people living with long COVID find it difficult to concentrate, but the handbook we've helped to create is accessible. It's easy to dip in and out off with small, digestible nuggets of practical advice. The one-to-one sessions with a LISTEN-trained practitioner might be daunting but those who receive them will truly feel listened to by a professional specifically trained to support those with long COVID. I have no doubt that everyone who goes through the trial will come away feeling more empowered in their recovery."

Provided by St. George's University of London