Long Covid Personalised Self-managemenT support- co-design and EvaluatioN (LISTEN)

PROJECT TITLE LONG COVID PERSONALISED SELF-MANAGEMENT SUPPORT- CO-DESIGN AND EVALUATION (LISTEN)
Funding body NIHR Long Covid
Total funding  £1,055,520
Team
  • Prof Fiona Jones, Kingston University
  • Professor Monica Busse, Cardiff University
  • Professor Nick Sevdalis, King’s College London
  • Professor Niro Siriwardena, University of Lincoln
  • Professor Adrian Edwards, Cardiff University
  • Dr Natalie Joseph-Williams, Cardiff University
  • Dr Philip Pallmann, Cardiff University
  • Dr Bernadette Sewell, Swansea University
  • Dr Jackie McRae, Kingston University
  • Dr Jessica Fish, St George’s University Hospitals NHS Foundation Trust
  • Dr Rachel Lowe, Cardiff University
  • Miss Maria Ines de Sousa de Abreu, PPI contributor
  • Dr Ishrat Islam, Cardiff University
Team/consortium
  • Kingston University
  • Cardiff University
  • Kings College London
  • University of Lincoln
  • Swansea University
  • St George’s University Hospitals NHS Foundation Trust
Overarching aim To work in partnership with individuals living with long Covid to design and evaluate a package of self-management support personalised to their needs.
Objectives Our research objectives are to:

  1. Co-design digital and paper-based self-management resources that are accessible and applicable for individuals with long Covid
  2. Co-design training for community rehabilitation practitioners to deliver remote one-to-one self-management support
  3. Establish the clinical and cost effectiveness of the intervention compared to usual care as currently available in the NHS
  4. Conduct a mixed-methods process evaluation to inform an integration and sustainability package that could be subsequently used (should the intervention be effective) as part of a rapid national scale-up effort.
Methods
  • We will use participatory methods with an accelerated Experienced-Based Co-Design (AEBCD) to inform intervention development and training.
  • We will then progress to an individually randomised controlled trial to evaluate the clinical and cost effectiveness of the personalised self-management support intervention compared to usual care as currently available in the NHS.
  • In order to understand mechanisms of action and ensure future scale up, we will conduct a mixed methods process evaluation to capture in detail implementation aspects of the intervention, including barriers to it, as part of the trial.
Outcomes The study will develop a LISTEN manual, including a clinical delivery and implementation guide for services. We will provide service user facing materials (including podcasts and blog posts from individuals with long Covid), a LISTEN briefing document and infographic for DHSC/SAGE, including a summary of what we found, what it means and how to scale it.
Outputs Peer reviewed publicationsJones F, Leggat FJ, Heaton-Shrestha C, Fish J, Siriwardena AN, Domeney A, Rowe C, Patel I, Parsons J, Blair J (2024). An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid. BMC Public Health 24:789.

Heaton-Shrestha C, Torrens-Burton A, Islam I, Busse M, Jones F (2022). Co-designing personalised self-management support for people living with long Covid: The LISTEN protocol PLOS One 17(10) :e0274469.

Potter C, Leggat F, Lowe R, Pallmann P, Riaz M, Barlow C, Edwards A, Siriwardena AN, Sevdalis N, Sewell B, McRae J, Fish J, de Sousa de Abreu MI, Jones F, Busse M (2023). Effectiveness and Cost-Effectiveness of a Personalised Self-management Intervention for living with long COVID: protocol for the LISTEN randomised controlled trial. Trials 24:75.

Conference presentations and webinars
Impact The study will develop an intervention, LISTEN, for long Covid which, if effective can be implemented at scale.