Why is this important and what is the need or knowledge gap?
Long COVID is a complex condition characterised by persistent post-COVID symptoms. Patients report over 200 different symptoms affecting 10 organ systems which commonly include fatigue, breathlessness, malaise, and cognitive dysfunction but can be different for every patient. Long COVID can have serious and debilitating long-term effects, making life challenging for thousands of people across the UK. Yet, the condition is still poorly understood, and lack of a clear diagnosis and effective management options increase the risk of long COVID patients feeling misunderstood by healthcare professionals and services and not receiving the treatment they require.
What did we do and who is involved?
We collaborate with Kingston University, clinicians and researchers from University of London, St George’s University Hospitals NHS Foundation Trust, Kings College London, Lincoln University and Cardiff University’s Centre for Trials Research on the Long COVID Personalised Self-managemenT support – co-design and EvaluatioN (LISTEN) study. The study is funded by the NIHR and works in partnership with people who have long COVID to co-design and evaluate a package of self-management support that can be personalised to individual needs.
What will change as a result of the outputs?
LISTEN co-produced a self-management intervention for people with long COVID and will now establish the impact of the intervention on routine activities, emotional well-being and social participation compared to usual NHS care as well as its cost-effectiveness and impact on the burden to the individual with long COVID and society.
The study could play a significant role in providing an effective and cost-effective self-management option for patients suffering with long COVID at home who currently have no real treatment options available to them.