LOCOMOTION April 2023 Newsletter

LOCOMOTION study recruitment reached 2168 in April 2023!

Long COVID Publications:

• A publication titled 'Patient and public involvement within epidemiological studies of Long COVID in the UK' has been published in the journal 'Nature Medicine'. Rachael Evans (Principal Investigator [PI] at our Leicester NHS site) and Nikki Smith (a member of our Patient Advisory Group [PAG]) are co-authors on the paper.
• The C19-YRS has recently been translated into a Thai language version, and a research paper has shown that it has acceptable validity and reliability for the evaluation and testing of the psychometric variables, and screening the symptoms and severity of Long COVID, in a Thai community population. The C19-YRS is an assessment to record Long COVID patients' symptoms, functioning, and disability, that was developed by members of the LOCOMOTION study team and is being further validated through our study.
• Visit our Scientific Publications page to find publications from the LOCOMOTION study.

News:

• A World Health Organisation (WHO) report has been published on the 'Health systems response to post COVID-19 condition'. This is from a side-event at the WHO’s Regional Committee for Europe in September 2022, and Manoj Sivan (Co-Chief Investigator of LOCOMOTION) was a member of the panel discussion.
• The Patient and Public Involvement (PPI) page of our website has been updated to include more information about the work of our PPI groups, including examples of our PAG's involvement in and out of Locomotion.
• An Online art exhibition, showcasing the experiences of children living with Long COVID, has been created from research conducted in association with the charity 'Long COVID Kids'. The exhibition displays photos and pictures drawn by children and what they said about their images, to help illustrate and raise awareness of the life changing impacts of Long COVID on them and their families.
• Manoj and Brendan (LOCOMOTION Co-Chief Investigators) attended the NIHR’s ‘Long COVID Networking Event’ to present highlights, anticipated impact, and lessons learnt from LOCOMOTION. The event was a gathering of the 19 NIHR-funded Long COVID studies. Rachael Evans (PI at our Leicester NHS site) was also in attendance on behalf of the PHOSP-COVID study. Manoj, Brendan, and Rachael are pictured below at the event with Melissa Heightman (Co-Chief Investigator of STIMULATE-ICP study).

• Members of our PAG are part of Kent and Medway ICB patient reference group, helping ensure their services continue to meet the changing needs of people with Long COVID. NHS Kent and Medway Long COVID service won a Healthwatch Medway Recognition Award for their work with people who have Long COVID to develop their LC service. A member of our PAG, Darren Winch, accepted the award on behalf of the team, pictured below.

Work Package (WP) Updates:

• WP1.1 (Quality Improvement Collaborative) - Our PAG previously conducted an audit of what is happening in our Long COVID clinics. A follow up review session from the PAG audit is scheduled in May to discuss the following topics:
  • How to make sure key assessments are not missed.
  • What tests would be best conducted by GPs before a diagnosis of Long COVID is made.
  • How are patients with ‘very Long COVID’ different from those who recover within the first year?
• WP1.1 (Quality Improvement Collaborative) - Following on from the publication of our BMJ practice pointer on Orthostatic tachycardia after covid-19, our NHS sites will be testing the prevalence of tachycardia on standing in patients attending the Long COVID clinics.
• WP1.3 (Health Inequalities) - Recruitment of people with Long COVID has now finished for this work package! The next step will be to produce a good practice guide for Long COVID clinics on how to address inequalities.
• WP1.4 (Vocational Rehabilitation) - Transcripts from qualitative interviews with patients and therapists have been coded for analysis. Next, the team will be coding the transcripts from interviews with key informants (occupational health, human resource, and managerial professionals).
• WP2.1 (Home Monitoring of Long COVID Symptoms) - Recruitment of participants is now at over 85% of desired target. People with Long COVID can still sign-up to participate, but not for much longer, click here for information on what is involved and how to participate.
• WP2.2 (Patient Reported Outcome Measures) - An abstract is to be presented at the UK PROMs (Patient Report Outcome Measures) conference in July, showcasing our work validating the C19-YRS PROM.
• WP3.1 (Pathway Development) - Researchers have been creating a 'Long COVID phenotype diagram', which over the last month has been expanded and clarified to be more evidence-based. This work will be submitted for publication in the near future!
• WP3.2 (Pathway Cost-effectiveness) - Analysis of data is underway looking at productivity loss and informal caregiver burden. Future analyses will look at health & social care costs and model structures of economic evaluations.

Workshop - Long COVID and Health Inequalities:

• The 'Qualitative Long COVID Network' are hosting a 'Long COVID and Health Inequalities' workshop on Monday 19th June 2023 at 10:30-13:00.
• Click here to sign-up to attend the hybrid event.
• The Keynote speaker will be Professor Nisreen Alwan, whose current research includes the Hi-COVE study (Hearing from the unheard: impact of Long COVID in minority ethnic groups in the UK)

 

Team Member Profile – Amy Rebane (Patient and Public Involvement Lead):

Background – I manage Patient and Public Involvement, Engagement, and Participation (PPIEP) for the NIHR Leeds Biomedical Research Centre. I have been there for almost five years and my role is focused on ensuring that patients and the public are at the heart of all our research activities. Research needs to be relevant, accessible, impactful, and meaningful to those that is it designed to benefit, and PPIEP is the best medium for ensuring this.

My Role – I oversee PPI for LOCOMOTION and work very closely with the two PPI co-applicants, the Patient Advisory Group (PAG), and Patient Advisory Network (PAN), to support their involvement in the study. I’m proud to be part of the LOCOMOTION study team and feel privileged to be working with such a driven patient group, their dedication and hard work is truly awe-inspiring. I’m confident that this, combined with a fantastic research team, will make a positive difference to Long-Covid patients, and it will be driven by the voices of those with lived experiences.

Fun Fact – I can never think of fun facts about myself, but I do love an ice breaker activity. I am that person who will have everyone doing an activity to introduce themselves, and standby it being a great way to well… break the ice!