LOCOMOTION September 2023 Newsletter
LOCOMOTION study recruitment reached 2,617 participants in September 2023!
Study Workstream (WS) Updates
WS1.1 (Quality Improvement Collaborative):
- Following on from the publication of our BMJ practice pointer on Orthostatic tachycardia after covid-19, our NHS sites have used the NASA Lean Test to test the prevalence of tachycardia on standing in Long COVID patients. Some of the Long COVID clinics have continued with testing as routine practice! The team are now analysing the Lean Test data and beginning to write-up their findings.
- WS1.1 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 now attended and reviewed 40 MDT meetings, covering discussions of 234 patients.
WS1.3 (Addressing Health Inequalities) - A paper on ‘Exploring the barriers and impacts of living with Long Covid: A view from the undiagnosed’ has been submitted to the Sociology of Health and Illness journal. This is built on the findings from the team's qualitative interviews with key informants (experts with relevant experience) and people with Long COVID from excluded/high risk groups not accessing Long COVID clinics.
WS1.4 (Vocational Rehabilitation) - A first draft of a vocational rehabilitation intervention road map is almost ready for review by our Patient Advisory Group. It prompts the clinician at various points in a patient's work journey and links to assessments and decision-making tools. This road map has been developed following the team's qualitative interviews with patients and professionals about the vocational rehabilitation needs in Long COVID.
WS2.1 (Home Monitoring of Long COVID Symptoms) - The team have now completed their interviews, which aim to establish the utility of using prospective symptom fluctuation and triggers diaries at clinic appointments.
WS2.2 (Patient Reported Outcome Measures) - Work is currently ongoing to align the additional symptoms in the modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) scale with the primary ten items in scale.
WS3.1 (Pathway Development) - Following the analysis of data, the team have three main publications planned, looking at:
- Difficulties in identifying Long COVID related clinical activity from electronic health records.
- Demographic and clinical characteristics of people with Long COVID clinical activity in their medical record.
- Patterns of secondary care interaction for patients who have a diagnosis of Long COVID.
Long COVID Publication:
A research group in Croatia evaluated the C19-YRSm, concluding it is a reliable and valid self-assessment scale for the assessment of Long COVID: Psychometric properties and observational data for COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) for Post-COVID-19 Syndrome.
The C19-YRSm is a Long COVID specific outcome measure that was developed by members of the LOCOMOTION study team. WS2.2 of the LOCOMOTION study is to collecting data C19-YRSm data from patients in our Long COVID services, for final development and psychometric testing of the measure.
Presentations by LOCOMOTION Team Members
Professor Trish Greenhalgh (Workstream 1 Lead) and Dr Manoj Sivan (Chief Investigator) spoke about the LOCOMOTION study at a Royal Society of Medicine (RSM) webinar - Spotlight on Long Covid: Part 3. Members of our Patient Advisory Group (PAG) were also involved via participation in the Q&A and clips of the PAG video were played at the event.
Professor Brendan Delaney (Co-Chief Investigator) presented alongside Shamil Haroon at the Primary Care Respiratory Society Annual Meeting on ‘Post COVID syndrome and how to treat it’.
ELAROS Webinar
ELAROS hosted a webinar on ‘Long Covid Service Evaluation and Forward Planning’. This included a presentation on a ‘National service evaluation of Long COVID clinics using ELAROS data’ conducted by members of the LOCOMOTION team.
ELAROS are one of our technology partners who developed the clinical web portal and patient app that hosts the C19-YRS questionnaire. This web portal/app is being used for data collection in WS2.2 'Validating digital PROMs and WHO core outcomes'.
LOCOMOTION Team
In September the team said goodbye and good luck to Ana Belen Espinosa-Gonzalez, WS3.1 Research Fellow. As she left the LOCOMOTION team to start her new role in the School of Public Health at Imperial College London.
In early November, the team will be saying goodbye to Jordan Mullard, WS1.3 Research Fellow, as she joins the Institute of Population Health Sciences at Newcastle University to work with the newly established NIHR Health Determinants Research Collaboration.
The LOCOMOTION team wish Ana and Jordan well in their new roles, and thank them both for their great work on the study!
Output from the NIHR Long COVID Networking Event
Back in April 2023, Manoj and Brendan (LOCOMOTION Co-Chief Investigators) attended a ‘Long COVID Networking Event’ organised by the NIHR (funder of the study). They attended to present highlights, anticipated impact, and lessons learnt from LOCOMOTION. The event was a gathering of the 19 NIHR-funded Long COVID studies. In September, NIHR published a summary of the discussions from this networking event, the topics of which were:
- Identifying important areas in Long COVID research.
- Patient and public involvement and engagement.
- Mechanisms and clinical characterisation.
- Therapeutics/interventions and management of services.
WARNING: PHOTO OF A SPIDER BELOW!
Team Member Profile – Nikki Smith (Patient Advisory Group Member):
Background – I worked as a Crime Scene Examiner and Fingerprint Expert for several years (yes, I’ve seen some things!), including presenting evidence in Court in a way in which a Jury would understand. I now run my own forensic science company that examines evidence for Court cases to ensure it is correct and fairly presented, although I had to give up part of my work due to Long COVID.
My Role – I am mainly involved in workstreams 1.1, 1.2, 3.1, and the Communications Group. Being a Founding Member of the charity Long COVID Support, I bring with me the voices of thousands of people experiencing the debilitating effects of Long COVID. I also wanted to use the skills learnt in my career to not only forensically examine evidence relating to Long COVID and write up findings, but to help produce information that can be easily understood by the layperson.
Fun Fact – I was a severe arachnophobe all my life (I would not return to the house unless I was shown the spider’s corpse!), until I participated in the Friendly Spider Programme at London Zoo. I subsequently became a volunteer on the course helping others to overcome their phobia (although have unfortunately had to put that on hold due to Long COVID). I highly recommend it to any fellow arachnophobes!
