LOCOMOTION August 2023 Newsletter
LOCOMOTION study recruitment reached 2,544 participants in August 2023!
New LOCOMOTION Publication:
Workstream (WS) 2.1 of the LOCOMOTION study have published their protocol paper - Digital home monitoring for capturing daily fluctuation of symptoms; a longitudinal repeated measures study.
WS2.1 is aiming to develop and examine the feasibility and usability of digital home monitoring for capturing daily fluctuation of symptoms in individuals with Long COVID and provide data to facilitate a personalised approach to the classification and management of Long COVID symptoms.
The publication details the workstream's primary and secondary objectives, study design, data collection, data analysis, Patient and Public Involvement, the consent process, and strengths and limitations.
New LOCOMOTION Workstream/’Task’
WS2.4 has been introduced, which is collecting Lean Test data from ‘healthy’ participants (people without Long COVID).
Some people with Long COVID have Orthostatic Intolerance (OI), a type of autonomic dysfunction in which they experience symptoms (such as dizziness, blurred visions, and palpitations) when they stand up, that are associated with a fast heart rate (HR) and/or a drop in blood pressure (BP).
OI can be assessed using the NASA Lean Test (NLT). The test involves measuring BP and HR whilst lying down (to establish a baseline) and then every 1-2 minutes after standing up, to assess the changes in HR and BP upon standing which provides information on the autonomic response to standing.
We are collecting NLT data from ‘healthy’ participants (people without Long COVID or a diagnosis of OI/autonomic dysfunction) to compare with findings in people with Long COVID to ensure results are reliable.
Royal Society of Medicine Long COVID Webinar
Professor Trish Greenhalgh (Workstream 1 Lead) and Manoj Sivan (Chief Investigator) are speaking about the LOCOMOTION study at an upcoming Royal Society of Medicine (RSM) webinar.
Spotlight on Long Covid: Part 3 is taking place on 28th September 2023 12:00-14:30.
Members of our Patient Advisory Group (PAG) will also be involved in the LOCOMOTION section of the webinar, via Q&A participation and clips of the PAG video being played at the event.
The webinar will also include two other presentations, ‘Long Covid: Three years on from the pandemic’ and ‘Treatment pathways’, and a panel discussion.
Underlying Pathophysiology of Long COVID
Professor Brendan Delaney (Co-Chief Investigator) presented on ‘What is the underlying pathophysiology of Long Covid?’ at the Society for Academic Primary Care (SAPC) Annual Scientific Meeting in July 2023.
He presented findings from a meta-review of studies linking symptoms with pathophysiology, to identify potential causes of common Long COVID symptoms. The findings of this meta-review will soon be submitted for scientific publication!
Long COVID Publications by LOCOMOTION Team Members
There is new publication from the PHOSP-COVID study - 'Acute blood biomarker profiles predict cognitive deficits 6 & 12 months after COVID-19 hospitalization'. Dr Rachael Evans (Principal Investigator at our Leicester NHS site) is an author on the publication and two members of our PAG are part of the Collaborative Group.
Dr Manoj Sivan and Román Rocha Lawrence (ELAROS - one of our technology partners) have published a British Medical Journal (BMJ) Opinion Piece on Digital interactive Patient Reported Outcome Measures (PROMs) for Long Term Conditions. Advocating for the need to adopt the use of Digital PROMs within all services for long term conditions due to the benefits of their implementation.
A 'clinical picture' article, authored by Manoj, was published in the Lancet. 'Venous insufficiency and acrocyanosis in long COVID: dysautonomia' details the case of a man with Long COVID who upon standing experiences a rapid purple/blue discolouration of his legs (acrocyanosis). This ‘blue legs’ phenomenon has received a lot media attention and cases of people sharing similar symptoms on social media. Further details of this can be found here.
A letter to the editor, authored by Manoj, was published in the Journal of Medical Virology regarding a global need for more awareness of dysautonomia in post-viral syndromes. This follows a recent study from a UK specialist Long COVID service that suggests a prevalence of 38% of patients reporting dysautonomia symptoms on the NASA Lean Test.
Long COVID and Return to Work
Dr Clare Rayner (PAG Co-Lead) presented at a World Health Organisation (WHO) webinar ‘Long COVID - The evolving research landscape’ in April 2023.
The recording of Clare’s presentation on the impact of Long COVID on functioning, with a specific focus on return to work, has now been uploaded to YouTube.
Patient and Public Involvement in LOCOMOTION
We have created an ‘animation’ video detailing what Patient and Public Involvement in research is and how it is integrated into LOCOMOTION.
ELAROS Webinar
On Thursday 28th September 2023 at 10:00-11:30, ELAROS are hosting a webinar on ‘Long Covid Service Evaluation and Forward Planning’
The aim of this webinar is to provide stakeholders involved in the management, delivery, and commissioning of specialist Long COVID Services with guidance on the evaluation of their service to consider as part of their forward planning.
Click here to find out more and register to attend.
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 August the team said goodbye and good luck to Sareeta Baley, the Clinical Research Fellow at our Birmingham NHS site. As she left the LOCOMOTION team to take up her new role as Lecturer in Occupational Therapy at the University of Wolverhampton!
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 been using the NASA Lean Test to test the prevalence of tachycardia on standing in Long COVID (LC) patients. Our Long COVID clinics have now reached the target of 250 completed NASA Lean Tests and analysis of this data will now commence.
WS1.2 (Experience-Based Co-Design) - Phase two of our interviews with LC patients to understand their experiences within clinics are now complete. The interviews are being transcribed, they will then be analysed and compared to those from phase one to understand any changes in experiences.
WS1.3 (Addressing Health Inequalities) - The team in this workstream are currently writing-up the findings from their data collection for a publication on building inclusive Long COVID services.
WS1.4 (Vocational Rehabilitation) - Following their qualitative interviews with patients and professionals about the vocational rehabilitation needs in Long COVID, the first draft of their analysis paper have been written.
WS2.1 (Home Monitoring of Long COVID Symptoms) - After recruiting over 400 participants to complete this study which is using wearables to identify triggers of changes in symptoms. The team have now begun their interview phase is underway to establish the utility of using prospective symptom fluctuation and triggers diaries at clinic appointments. The team collaborated with the WS1.3 (Inequalities) team to integrate ethnicity and socioeconomic status questions into their interviews.
WS2.2 (Patient Reported Outcome Measures) - Following the modification of the C19-YRS (Long COVID specific PROM) and collecting data on the use of this modified version in Long COVID patients, the paper validating this modified measure is in advanced stage and will soon be submitted for publication.
WS3.1 (Pathway Development) - Analysis of North-West London (WSIC) data is being finalised and should be completed very shortly!
WS3.2 (Pathway Cost-Effectiveness) - An article on 'The impact of Long COVID on productivity' was submitted for publication, after receiving comments as part of the peer-review process, the team have revised the manuscript and this is now being circulated among the authors for further comments.
