LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK

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 self-management and providing guidance and decision support for primary care. We aim to establish a ‘gold standard’ of care by systematically analysing current practices, iteratively improving pathways and systems of care. Methods and analysis This mixed-methods, multisite study is informed by the principles of applied health services research, quality improvement, co-design, outcome measurement 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: workstream 1 (qualitative research, up to 100 participants), 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, return to work and peer support; workstream 2 (quantitative research, up to 5000 participants), patient self-management at home, technology-supported monitoring and validation of condition-specific outcome measures and workstream 3 (quantitative research, up to 5000 participants), generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and analysis of costs. Study governance includes an active patient advisory group. Ethics and dissemination LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Participants will provide informed consent. Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers. Trial registration number NCT05057260,NCT15022307.

Effect of using a structured pacing protocol on post‐exertional symptom exacerbation and health status in a longitudinal cohort with the post‐COVID‐19 syndrome

“…27 Studies have struggled to identify a as LOCOMOTION. 30 This study has a few limitations. The small sample size raises the uncertainty about the potential size of improvement.…”

“…Sukocheva et al 28 summarize that extensive data collection and registration of symptoms are needed to determine whether long‐term PCS symptoms are due to a postviral syndrome such as ME/CFS. Post‐COVID‐19 studies have been initiated in the United Kingdom, such as the posthospitalisation COVID‐19 study (PHOSP‐COVID) which intends to prospectively follow 10 000 patients for 1 year 29 in addition to the National Institute for Health Research funding 15 longitudinal COVID‐19 focused research programs to improve our understanding of PCS and potential treatment options, such as LOCOMOTION 30 …”

Long covid—an update for primary care

“…Patients who were members of the LOCOMOTION quality improvement collaborative (see protocol paper for details65) contributed the comments in box 1. RM has lived experience of long covid and co-chairs the patient advisory group for LOCOMOTION.…”

“…The first was a literature search of PubMed using the terms “post-acute covid-19 syndrome (MeSH)”, and “long covid (title and abstract)” and including basic science studies and reviews,11474850 narrative reviews, and conceptual papers considering mechanisms,142426364549526466 clinical trials (of which none had reported at the time of writing), observational studies and reviews of these,15161733344344466267686970 systematic reviews of rehabilitation programmes,71 studies on outcome measures,356061727374 social science studies of long covid in vulnerable groups and underserved communities,525354 surveys121875 and a Delphi study76 of patient priorities, and qualitative studies of the patient experience 213404177. Secondly, the paper drew on group discussions with front line clinicians and patient partners (the LOCOMOTION consortium65) who are members of a national quality improvement collaborative for long covid clinics in the UK (these discussions prompted us to undertake further literature searches where needed). Thirdly, we drew on “grey literature” including service specifications,7879 Office of National Statistics publications,6780 guidelines, and policy documents from the UK and internationally,3556576381 and patient facing self-help literature 2037…”

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 NIHR project Long COVID Multidisciplinary consortium for Optimising Treatments and Services across the NHS (LOCOMOTION),37 is also an advisor for the WHO—Europe on COVID-19 rehabilitation and is also involved in the WHO working party developing a core set of outcome measures for LC.…”