Protocol for mixed-method study by LOng COvid Multidisciplinary consortium: Optimising Treatments and servIces acrOss the NHS (LOCOMOTION)

Abstract

Introduction: Long COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most do not have access to specialist long COVID services. We seek to optimise long COVID care both within and outside specialist clinics, including improving access, reducing inequalities, helping patients manage their symptoms effectively at home, and providing guidance and decision support for primary care. We aim to establish a gold standard of care by systematically analysing symptom clusters and current practices, iteratively improving pathways and systems of care, and working to disseminate better practices. Methods and analysis: This mixed-method, multi-site study is informed by the principles of applied health services research, quality improvement, co-design, and learning health systems. It was developed in close partnership with patients (whose stated priorities are prompt clinical assessment; evidence-based advice and treatment; and help with returning to work and other roles) and with front-line clinicians. Workstreams and tasks to optimise assessment, treatment and monitoring are based in three contrasting settings: [1] specialist management in 10 long COVID clinics across the UK, via a quality improvement collaborative, experience-based co-design and targeted efforts to reduce inequalities of access; [2] patient self-management at home, with technology-supported monitoring; and [3] generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and prioritisation criteria across the primary-secondary care interface, along with analysis of costs. Study governance includes an active patient advisory group. Ethics and dissemination: LOCOMOTION is sponsored by the University of Leeds and approved by Yorkshire & The Humber - Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers to influence service specifications and targeted funding streams.

The modified COVID‐19 Yorkshire Rehabilitation Scale (C19‐YRSm) patient‐reported outcome measure for Long Covid or Post‐COVID‐19 syndrome

“…The NIHR‐funded project Long Covid Multidisciplinary Consortium for Optimising treatments and services acrOss the NHS (LOCOMOTION) is a platform of >5000 patients in the UK whose symptoms and functional limitations will be captured using C19‐YRSm at regular 3‐monthly intervals. 26 We will have the opportunity to assess the construct and criterion validity of the scale, responsiveness, and ability to monitor the effectiveness of interventions, along with picking up the natural daily and weekly fluctuations of the condition. This more extensive data set can also estimate how effectively the measure captures differences between individuals and changes over time within the same individual.…”

“…Finally, there will be some uncommon symptoms and functional limitations that are not captured by the scale. Such aspects should be captured under the "other symptoms" section of the scale in future studies (such as the LOCOMOTION study)26 informing the future development of the scale.To conclude, a condition-specific patient-reported outcome measure, C19-YRSm, has been developed to capture the common symptoms, functional disability, and overall health in Long Covid.The scale content covers all aspects of the WHO ICF framework. The scale allows patients and health care staff to monitor these aspects over the course of the condition, potentially capture Long Covid fluctuations and assess the impact of rehabilitation interventions for the condition.…”

“…F I G U R E 5 Mapping of the C19-YRSm onto the WHO ICF framework Our future work with the scale will involve further evaluation of psychometric properties and validation of the C19-YRSm in the Long Covid population. The NIHR-funded project Long Covid Multidisciplinary Consortium for Optimising treatments and services acrOss the NHS (LOCOMOTION) is a platform of >5000patients in the UK whose symptoms and functional limitations will be captured using C19-YRSm at regular 3-monthly intervals 26. We will have the opportunity to assess the construct and criterion validity of the scale, responsiveness, and ability to monitor the effectiveness of interventions, along with picking up the natural daily and weekly fluctuations of the condition.…”

The Adapted Autonomic Profile (Aap) Home-Based Test for the Evaluation of Neuro-Cardiovascular Autonomic Dysfunction

“…This test can be further evaluated in large-scale Long Covid studies such as NIHR-funded LOCOMOTION. 11…”

HEART rate variability biofeedback for LOng Covid symptoms (HEARTLOC): protocol for a feasibility study

“…Policy impact will be aided by our strong existing links to NHS England and the UK Long COVID National Task Force. Dr Sivan, who leads the NHR project Long Covid Multidisciplinary consortium for Optimising Treatments and Services across the NHS (LOCOMOTION) 35 , is also advisor for the World Health Organisation (WHO - Europe) on COVID-19 rehabilitation and is also involved in the WHO working party developing a core set of outcome measures for LC.…”