Title: Long Covid Personalised Self-managemenT support- co-design and EvaluatioN (LISTEN)
Funder: Department of Health and Social Care

Abstract: Successful response to long Covid requires rapid development of effective interventions which address the multiple, currently often unexplained, symptoms characterising the condition. In the absence of definitive evidence for a single intervention we will extrapolate learning from personalised self-management support interventions. Such programmes are based on self-efficacy principles and involve individuals gaining knowledge, skills and confidence to manage their condition(s) effectively in the context of everyday life. They have been shown to be effective in improving a range of outcomes for people living with complex long-term conditions. In partnership with individuals with long Covid and NHS staff, we will 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. We 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 primary analysis will be intention-to-treat using a partially clustered multi-level model. Our health economics evaluation will take a perspective of both the NHS and Personal Social Service. Our mixed methods process evaluation will assess how acceptable, feasible and appropriate the intervention is for both service users and providers. We 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.

Lay abstract: Individuals with long Covid experience a wide variety of ongoing problems such as tiredness and difficulty with everyday tasks and means they can struggle to return to their former lives. This is then made worse by uncertainty and a lack of understanding by some healthcare professionals The LISTEN project aims to work in partnership with individuals living with long Covid to design and evaluate a package of self-management support personalised to their needs. This project will take 24 months. In the first six months we will recruit people living with or recovered from long Covid, and rehabilitation practitioners to a LISTEN Co-design group, helped by Diversity and Ability who have expertise in reaching seldom heard populations. We will use different activities such as online groups to design our intervention to include a book, digital resources and a new training package for rehabilitation practitioners to enable them to deliver the intervention. We will recruit individuals with long Covid and randomly allocate to an intervention or control group. The control group will receive NHS information already available; the intervention group will receive the new resources and up to six coaching sessions from the trained rehabilitation practitioners. We will test the effect of the intervention on how they feel and cope with everyday activities. We will record expenses and loss of work to understand the impact of long Covid and our intervention on society and individuals. We will explore ways in which the intervention can be used across communities. Individuals living with long Covid and a large PPI panel from diverse backgrounds have helped shape the LISTEN project. With our codesign group and inclusion advisor we will recruit a PPI panel cochaired by our PPI co-applicant. We will share our findings through accessible communications designed with our PPI group, academic publications and conferences.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: INFECTION