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LOCOMOTION Conference / Away Day - June 2023

Date

In June 2023 we had a hybrid conference/'away day' for all members of the LOCOMOTION team. This was an opportunity for work package teams to present some of their current findings to the wider study team. We also hosted workshops for attendees to discuss topics that would support upcoming work over the final six months of the study and beyond!

Also, for those who were able to attend in-person, it was a chance for many team members to meet some colleagues face-to-face for the first time after working with them on the study for two years!

We had 30 attendees in-person and 29 joining virtually, making for a truly hybrid event with those attending remotely also being involved in the workshops and the post-presentation Q&As.

Photo of the team at the Locomotion conference June 2023

Presentations

There were 8 presentations across the day, with representation from each of the work package (WP) teams and from our Patient Advisory Group (PAG). The presentations were:

  • Long Covid: Then and Now. (PAG)
    • Clare Rayner talked about the development in understanding of various LC topics between the start of LC and now.
    • Topics discussed included; cognitive dysfunction, 'red flag' conditions, the economic effect of LC, the impact of reinfections, and the duration of LC.
  • Quality Improvement in LC Clinics. (WP1.1 - Quality Improvement)
    • Trish Greenhalgh explained how the methodology of our quality improvement work in the study has been revised and adapted in response to findings of the initial work.
    • Methodology has shifted from a Quality Improvement Collaborative model to interviews with clinic staff and attending Multi-Disciplinary Team meetings at the LC clinics to gather findings.
    • In the presentation, Trish outlined the key findings from this work and its implications.
  • LC & Health Inequalities: Inclusive Practice in Treatment/Support. (WP1.3 - Health Inequalities)
    • Jordan Mullard outlined the rationale of this work package which is coproducing clinical best practice with people who have limited access to/poorer outcomes from LC clinics. The research has involved interviews with people not accessing LC clinics from excluded/high risk groups and with experts that have relevant experience.
    • Jordan presented findings on the key barriers to accessing LC clinics and the impact of LC on these people. Findings on the attitudes to LC, in terms of healthcare practice and government policy, were also presented.
    • Inequalities that have been identified by the Locomotion LC clinics were outlined, in addition to examples of good practice, in terms of referral and clinic access, that have been found in these clinics.
  • Defining the Vocational Rehabilitation Need in LC. (WP1.4 - Vocational Rehabilitation)
    • Rory O'Connor gave a talk about what vocational rehabilitation is and the impact of LC on workability and the economy. This led into the aims of this study work package to understand the vocational rehabilitation need in LC and develop a programme that supports return to work and reduce work instability.
    • Rory outlined the interview methodology of the study and presented the interview findings of vocational rehabilitation needs in LC. Themes included; the return to work process, the biggest return to work challenges, and the uncertainty of their future.
  • Digital Home-Monitoring for Capturing Daily Fluctuation of Symptoms: A Longitudinal Repeated Measures Study. (WP2.1 - Home Monitoring of LC Symptoms)
    • Helen Dawes and Mae Mansoubi outlined the methodology of this work package that is using smartphone apps and wearable sensors to capture symptom fluctuations in real-time, alongside the recording of physical activity.
    • They also outlined the methodology of their sub-studies, 1) exploring the potential to use measuring heart rate and heart rate variability as feedback for clinical purposes, and 2) assess the usability and acceptability of using home monitoring of triggers and symptoms of LC at clinic appointments.
    • As the data collection is still ongoing, Helen presented data on the characteristics of the participant cohort, regarding their variety in age, sex, ethnicity, employment status, etc. This data was also compared between participants who were recruited through the LC clinics and those recruited via social media, to determine if these cohorts differ.
  • Assessment & Validation of the Modified C19-YRS Patient Reported Outcome Measure. (WP2.2 - Patient Reported Outcome Measures)
    • Mike Horton provided an outline of what the C19-YRS questionnaire is and how it was developed into the modified version. He explained the aim of this study to psychometrically assess and validate the modified version of the questionnaire, and the process for this.
    • Mike presented findings from the questionnaire validation, in terms of how the response category structure is functioning and whether there is any evidence of Differential Item Functioning between different patient groups.
  • Statistical Analysis of Study Population. (WP3.1 - Pathway Development)
    • Denys Prociuk presented preliminary LC data extracted from a database of over 3.5 million patients. He explained the process of identifying people with LC from this large dataset using codes, and outline the demographics of those with LC and their prevalence of comorbidities in comparison to the general population.
    • Denys also presented data on the trajectories LC diagnosis and LC clinic referrals over time. The presentation also included an analysis of the time between LC diagnosis and referral to a clinic, the number of secondary care appointments for patients before and after LC diagnosis, and the figures of readmittance following any secondary care appointment for LC patients.
  • Using ELAROS Data to Obtain Health Economic Parameters. (WP3.2 - Pathway Cost-effectiveness)
    • Joseph Kwon outlined the methodology of this work package that has collected Health Economics Questionnaire data on the ELAROS digital platform, at baseline and follow-up. Data collected includes services received, health and social care utilisation, informal caregiver burden, and productivity.
    • Joseph presented the preliminary analysis results on the productivity and informal caregiver impact of LC. Results showed changes in changes in paid work status, work performance, and monthly work income, and the comparison of these figures with other populations.
    • The presentation also included data on the monetary values of productivity loss and informal care receipt from LC. It concluded with information about the future analyses of the work package on health & social care costs and longitudinal trajectories.

Follow our twitter account (@LOCOMOTIONstudy) and keep an eye on our Scientific Presentations page, to see the publications that will emanate from the research and findings discussed in these presentations.

PAG Video

Attendees were also shown an amazing video created by our PAG, in which PAG members spoke about the following topics:

  • Who they are and why they are part of the study.
  • What they hope LOCOMOTION will achieve
  • Their worst experiences of support so far.
  • Their best experiences of support so far.
  • What they want to say to the LOCOMOTION clinical/research staff.

Workshops

There were two workshop sessions at the event, each with its own theme that were split into three groups discussing different topics.

The theme of the morning workshops was the 'Future of LC Services' and the topics were:

  • Who should lead LC services?
  • How should LC services look (what conditions should be managed)?
  • How can we ensure vocational rehab is an integral part of LC services?

The theme of the afternoon workshops was the 'Final Study Aims and Beyond' and the topics were:

  • Using the lean test to establish the prevalence of Orthostatic Intolerance in LC patients.
  • Inclusive best practice and imagining the possibilities in LC support.
  • Identifying data for future publications.

Photo from a workshop at the Locomotion conference June 2023

After the event

As the event was an opportunity for colleagues to meet in person after many months working together, some of the attendees were able to stay after the event for continued discussions about LC/LOCOMOTION and to network/socialise.

Photos of after conference social event