7 Nov 2021

Fatigue, and cognitive dysfunction are the most common, and exercise, mental activity and stress are important triggers. Long Covid is estimated to affect at least 10% of individuals with a positive Covid-19 test, although this is an underestimation as many in the early months of the pandemic were never tested.

The uncertainty and confusion of long Covid with varied, relapsing and remitting symptoms is compounded by a heavy sense of loss and stigma. The lack of a clear diagnosis has parallels with other poorly understood and medically unexplained conditions which increases the risk of individuals with long Covid feeling misunderstood and overlooked by healthcare professionals and services, respectively.

Project aims

This project, (the LISTEN study) aims to work in partnership with people living with long Covid and to co-design, co-deliver and evaluate a personalised self-management support intervention for people living with long-Covid at home.

How the research will be carried out

The research team will work with NHS staff and people with living with long Covid to co-design a personalised self-management support intervention including digital and paper-based resources and training for community rehabilitation teams.

The intervention will involve one-to-one remote coaching support (up to six sessions) from trained rehabilitation practitioners, and access to co- designed resources providing contextual information, narratives and problem-solving ideas from individuals living with and recovering from long Covid.

The research team will conduct an individually randomised trial to establish the impact of the intervention on function and routine activities and wellbeing compared to usual NHS care. Recruitment will be inclusive of age, gender, ethnic and disability groups. We will assess participants after three months and consent for longer term follow-up.

The health economics evaluation will  include NHS and Social Service care. The mixed methods process evaluation will assess how acceptable, feasible and appropriate the intervention is for both service users and providers.  Researchers will explore fidelity, mechanisms of impact and contextual issues to understand how and why the intervention worked, mediators and responses of those receiving it and, if effective, how it could be spread, ensuring that self-management for people with long Covid can be sustained and delivered at scale.

Our collaborators

Kings College London (Professor Sevdalis is lead for Implementation Science work package) Diversity and Ability (Disabled-led Social Enterprise), Bridges Self-Management  (Social Enterpise which runs in partnership with St George’s, University of London and Kingston University), Cardiff University, Swansea Univerity, Lincoln Univerity and St George’s Hospital NHS Foundation Trust.

How patients and the public are involved in the project

The research team presented the proposal to the ARC South London public research panel which was set up as part of the Covid response and who come from diverse backgrounds across south London. They reviewed the proposal and advised us to engage more widely with local community groups and utilise their ‘expertise by experience’ of the barriers and facilitators to accessing current services including digital resources such as the NHS ‘my Covid recovery’ portal. This directly informed our inclusion strategy.

Researchers will work with ‘Diversity and Ability’ a disabled-led social enterprise which supports organisations and social justice projects to create inclusive cultures. They have also established a patient and public involvemen panel co-led by a Covid-19 survivor and will co-design and utlise all stakeholders (PPI panel and co-design participants) throughout the study.

Potential benefits of the study

The research team will use a participatory methodology to co-design a new personalised self-management support intervention and training. No training programme currently exists for community rehabilitation practitioners to deliver self- management support for individuals with long Covid.  They will evaluate the effectiveness and cost effectiveness of self-management support for individuals with long Covid whilst exploring NHS usual care. The LISTEN study will provide a comparation to existing long Covid services which were rapidly implemented but have not been fully evaluated.

They will further initiate a change in attitude, knowledge and awareness of the value of working in partnership with individuals with long Covid. This research is responding directly to the knowledge gap and unmet needs identified by the long Covid community and the call for a holistic, individualised, intervention which reflects the diversity and complexity of symptoms for individuals with long Covid.

A mixed methods process evaluation will deliver a detailed study of the implementation process, to help identify implementation support strategies that can be used to scale-up the trialled intervention (e.g a national train-the-trainers approach to support delivery across UK services, web platform, training manuals etc) and a training package for community rehabilitation teams ready for scale-up and implementation by the end of the project.

This study was adopted by ARC South London in November 2021. It is funded by the NIHR and will be completed by July 2023.