LISTEN Trial: Personalised Self-Management Support for People Living with Long COVID

Summary

The LISTEN trial evaluated a co-designed personalised self-management intervention for people living with Long COVID who had not been hospitalised with the first COVID infection. The intervention consisting of resources and 1:1 support also drew on key evidence and impact from Bridges Self-Management, and was personalised to people’s symptoms, needs and priorities. The LISTEN intervention improved emotional wellbeing, reduced fatigue, enhanced self-efficacy, and facilitated a modest improvement in everyday activities. It was also feasible, acceptable, safe, cost-effective from a societal perspective due to the impact of long Covid on work, informal care and usual activities, and offers a scalable support model for people with Long COVID.

Study Design was a pragmatic, multicentre, randomised controlled trial with embedded mixed methods process evaluation. ^1,2

Participants: 554 adults with Long COVID (mean age ~50, ~72% women), non-hospitalised during acute infection

Intervention: Up to six personalised one-to-one remote sessions (phone/video) delivered by highly trained healthcare practitioners (HCPs) according to core fidelity markers, supported by a co-designed self-management handbook.

Comparator: Usual NHS care, which varied widely across sites.

Duration: Three-month follow-up post-intervention.

Study Registration: ISRCTN15188422

Main Findings (in more detail)

Co-design and PPIE

LISTEN used an Accelerated Experience-Based Co Design (AEBCD) approach, bringing together people living with Long COVID and healthcare practitioners (HCPs) to co-design the intervention and supporting materials. 28 individuals with Long COVID and 9 HCPs participated in the process, through eight virtual group workshops and 12 one-to-one interviews. People with Long COVID shared their personal stories, challenges, and successful self-management strategies during group and individual sessions, defined priorities for intervention content, and the structure and language of the handbook. Discussions also informed design of practitioner training which was co-facilitated by the research team and people with long COVID. ^3,4

A public and patient involvement (PPI) group of seven people was actively involved in guiding the process, participating as co-authors on publications and presenters at knowledge exchange events.^5,6

Primary Outcome

Routine daily activities (Ox-PAQ): Improvement in the intervention group; adjusted for site and baseline outcome measures difference –2.68 (95% CI –5.38 to 0.02), p = 0.052. When further adjusted for age, gender, ethnic group, employment status, and the number of long COVID symptoms at baseline, the differences were statistically significant [−2.90 (−5.66 to −0.15)].

Secondary Outcomes (all significant when adjusted for site and baseline outcome measures)

Reduction in fatigue; –7.93 (95% CI –11.97 to –3.88), p < 0.001. Improvement in emotional wellbeing; –5.29 (95% CI –8.37 to –2.20), p = 0.001. Increased Self-efficacy (confidence) to manage their condition; +2.63 (95% CI 1.50 to 3.75), p < 0.001. Improved quality of life (SF-12): +2.36 (95% CI 0.77 to 3.96), p = 0.004. No serious adverse events related to the intervention.

Process Evaluation Highlights

Conducted between September 2022 to January 2024 at England and Wales trial sites, alongside the main randomised controlled trial (RCT) and explored implementation fidelity, participant experience, and contextual factors.^6,7   Integrated methods included:

Observations and focus groups with healthcare practitioners (HCPs) delivering the intervention (36 HCPs involved); Standardised implementation surveys completed by 197 intervention participants; Semi-structured interviews with 49 participants spanning both intervention and usual care arms

Key Themes

1. Personalisation at the core: individualised sessions helped people feel heard, validated, and supported in ways some NHS services did not.

2. Uncertainty in care pathways: Inconsistent access to Long COVID services influenced participant expectations and experiences.

3. Emotional and relational benefits: Participants appreciated a space for non-judgemental discussion and tailored goal setting.

4. Spectrum of change: Impact varied; some saw significant progress, while others noted small but meaningful shifts in their mindset, knowledge, and energy management.

5. Healthcare professional confidence: The training and support package for HCPs, enabled them to reach a high level of skills and confidence to personalise support to the complex needs of people with Long COVID.

6. Feasibility and fidelity: Intervention was delivered with a high level of fidelity, consistency and acceptability using remote training and delivery methods.

Conclusions

LISTEN represents a significant step forward in long COVID management, demonstrating how personalised high-quality care can improve health outcomes for individuals and deliver societal return on investment.

The outputs of LISTEN include a refined intervention logic model to help understand the core intervention components and quality markers of training required to be able to spread and sustain the LISTEN intervention in the longer term.

Future research should focus on scalability, integration into existing services, diversity, and long-term effectiveness to ensure sustainable, inclusive healthcare solutions for people living with Long COVID and other post-infection conditions.

Published Papers

Knowledge Dissemination Webinars

Webinar 1: How did we design an intervention that matters most to people with long Covid?

Webinar 2: How did we deliver and implement the LISTEN intervention?

Webinar 3: What did we find out when we evaluated the LISTEN intervention?

Telling the story of LISTEN

References

1. Potter, C., Leggat, F., Lowe, R. et al. 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 (2023). https://doi.org/10.1186/s13063-023-07090-w
   
2. Heaton-Shrestha C, Torrens-Burton A, Leggat F, 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. https://doi.org/10.1371/journal.pone.0274469
   
3. Leggat, F.J., Heaton-Shrestha, C., Fish, J. et al. An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid. BMC Public Health 24, 789 (2024). https://doi.org/10.1186/s12889-024-18267-6
   
4. Jones F, Domeny A, Fish J, Leggat F, Patel I, McRae J, Rowe C, Busse ME. Using co-design methods to develop new personalised support for people living with Long Covid: The ‘LISTEN’ intervention. Health Expect. 2024 Jun;27(3):e14093. doi: 10.1111/hex.14093. PMID: 38783782; PMCID: PMC11116943.
   
5. Busse M, Pallmann P, Riaz M, Potter C, Leggat FJ, Harris S, Longman AJ, Lowe R, Edwards A, Siriwardena AN, Sevdalis N, McRae J, Fish J, Sewell B, Jones F. Effectiveness of a personalised self-management intervention for people living with long covid (Listen trial): pragmatic, multicentre, parallel group, randomised controlled trial. BMJ Med. 2025 Jan 31;4(1):e001068. doi: 10.1136/bmjmed-2024-001068. PMID: 40046291; PMCID: PMC11881025.
   
6. Jones F, Busse M, Rowe C, Domeney A, Patel I. We must recognise the collective wisdom of those with lived experience of long covid BMJ 2025; 388 :r243 doi:10.1136/bmj.r243
   
7. Leggat F, Torrens-Burton A, Sewell B, Sevdalis N, Busse M, Domeney A, Parsons J, Abreu MIS, Jones F. Personalisation at the Core of Success: Process Evaluation of the LISTEN Randomised Controlled Trial Evaluating a Personalised Self-Management Support Intervention for People Living With Long Covid. Health Expect. 2025 Jun;28(3):e70270. doi: 10.1111/hex.70270. PMID: 40320865; PMCID: PMC12050411.
   
8. Harries S et al (2025) Cost-Effectiveness of a Personalised Self-management Intervention for People Living with Long Covid: the LISTEN randomised controlled trial. Cost‐Effectiveness of a Personalised Self‐Management Intervention for People Living With Long Covid: The LISTEN Randomised Controlled Trial – Harris – 2025 – Health Expectations – Wiley Online Library