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LOCOMOTION July 2023 Newsletter

Date

LOCOMOTION study recruitment reached 2,476 participants in July 2023!

Work Package (WP) Updates:

  • WP1.1 (Quality Improvement Collaborative) - Following on from the publication of our BMJ practice pointer on Orthostatic tachycardia after covid-19, our NHS sites have been using the NASA Lean Test to test the prevalence of tachycardia on standing in Long COVID (LC) patients. Our LC clinics have so far completed 156 NASA Lean Tests, with our target being 250.
  • WP1.1 (Quality Improvement Collaborative) - WP1.1 researchers have been conducting some fieldwork/ethnography at the LOCOMOTION LC clinics. The purpose of these fieldwork sessions is to witness social and professional interactions between the clinic’s multi-disciplinary team (MDT) and to identify facilitators and barriers to implementing change in clinical practice. They have so far attended and reviewed 30 hours of MDT meetings, covering discussions of 148 patients.
  • WP1.2 (Experience-Based Co-Design) - Phase two of our interviews with LC patients to understand their experiences within clinics are underway. These qualitative research interviews have now been completed with 13 LC patients in phase two. Once all the interviews are complete, they will be analysed and compared to those from phase one to understand any changes in experiences.
  • WP1.3 (Health Inequalities) - Ghazala Mir (WP1.3 lead) presented at the NHS England ‘Lived Experience with LC’ conference, focusing on WP1.3’s 'Best Practice Guidance for Building Inclusive Long Covid Services'.
  • WP1.4 (Vocational Rehabilitation) - After conducting and analysing qualitative interviews with patient and professionals about the vocational rehabilitation needs in LC, a paper is being written discussing the findings of the research.
  • WP2.1 (Home Monitoring of Long COVID Symptoms) - The final participant is now enrolled in the study, once follow-up data collection is completed for all remaining participants data analysis will commence.
  • WP2.2 (Patient Reported Outcome Measures) - Over 2,000 participants have been recruited to WP2.2 using the C19-YRS digital Patient Reported Outcome Measure platform.
  • WP2.3 (Obtaining aAP Test Normative Values) - We have been seeking 'healthy' participants (people without LC) to complete the adapted Autonomic Profile (aAP) test of autonomic dysfunction. This is so we can understand what constitutes normal values for the test, which will help define abnormal value cut-offs for LC patients. We have so far received 84 completed aAP tests! More participants are still required - Find out more here.
  • WP3.1 (Pathway Development) - Analysis of North-West London (WSIC) data is progressing well. The final report created will contain extractable graphs that can be included in the publications written by other LOCOMOTION work packages, highlighting the collaborative working of the whole study team.
  • WP3.2 (Pathway Cost-effectiveness) - After writing and submitting a paper about 'The impact of LC on productivity', the team are now writing up findings from their analysis of the 'Health Economic Impact of LC'.

Long Covid Webinar Videos:

‘Long Covid: What Happens Next?’ webinar event took place in July.

Recordings from this event are available on YouTube. The session topics and how LOCOMOTION researchers and Patient Advisory Group (PAG) members were involved are:

Long COVID Publications:

Publication Icon

Digital PROMs Platform:

See two short videos of Manoj interviewing Román and Paul (from ELAROS) about the C19-YRS app, a platform being used by LC clinics in our study to capture Patient Reported Outcome Measures (PROMs). Listen to them discuss the development process, achievements, and future plans for the digital PROMs platform.

Elaros and C19-YRS Logos

Workshop - Reflecting on what works in LC clinics:

One of the workshops at our recent LOCOMOTION conference/away day was  ‘What’s working, what’s not working and what do we want to see more of in LC Care and Clinics?’. Some of the key takeaways from the workshop were:

  • Important to focus on symptoms, when it comes to treatment, not just the diagnosis of LC
  • It’s helpful when all relevant services to support patients are based within the same Trust as referrals are quicker
  • There is still a lack of awareness/knowledge about LC, so patients appreciate staying with the same clinician.

Learn more about LOCOMOTION work packages and team members (and their pets!)

Each month we ask members of the LOCOMOTION team to send in profiles about themselves and/or their work package, so we can all get to know each other better, with us being such a large team. Our project manager recently got a puppy which sparked the idea of us including 'the pets of LOCOMOTION' in our newsletter to make it a bit more 'colourful'. Keep reading to learn about Legs the cat and Truffle the Cavapoo!

Madeline Goodwin — Research Administrator

Background

In my previous life I was a Data Manager, working for ten years at the Leeds Institute for Clinical Trials Research in the Older People portfolio of the Complex Interventions Division.

I designed and developed case report forms and databases, and was responsible for the monitoring of day-to-day tasks such as new participant registrations, data receipt, data entry, data cleaning, data chasing, and follow-up management. Prior to working in trials, I worked in a variety of hospital settings, first as a Healthcare Assistant, and later as a Psychology Assistant. In 2017 I became unwell and after struggling for some time, decided to step away from trials and switch to part-time administration, which led me to apply for my role on LOCOMOTION.

My Role

I assist the Project Manager with general administration such as organising and minuting meetings, raising purchase orders, processing invoices, and monitoring and reporting on recruitment. I also help with an NHS England service evaluation by monitoring PROM completion and prompting participants to complete outstanding assessments. I have found LOCOMOTION very interesting, not least because in September 2022 I was (finally) diagnosed with hypermobile Ehlers-Danlos Syndrome which has an element of overlap in symptoms with Long Covid!

Fun Fact

I have a cat called Legs – yes, really! In 2015 I adopted two kittens from the RSPCA – one with a little white tip on his tail, whom I named Tippy, and one that had, well, very long gangly legs compared to his bother (the runt of the litter). So, Legs became his ‘temporary’ name, which has rather unfortunately stuck! It’s quite embarrassing taking him to see the Vet – I was once asked to clarify his correct name because there ‘must be an error on the system’! Legs often hangs out with me at home during meetings and when I’m writing minutes by watching meeting recordings – I think he likes the company of the team!

Photo of Madeline and Legs the cat

Truffle

I (Tom, Project Manager) recently added a new addition to the family — Truffle the Cavapoo. She loves to play, meet other dogs and people, and has already been to a puppy party — she has a better social life than me! She even has her own Instagram page. During the day she loves to lay by my feet while I work, although sometimes she isn’t in the mood to just relax and wants to nibble on my toes.

Photos of Truffle the dog