LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK
,
Samantha Jones,
Helen Davies,
Stavros Petrou,
Simon de Lusignan,
Carlos Echevarria,
Iram Qureshi,
Trisha Greenhalgh,
Jonathan Clarke,
Helen Dawes,
Simon de Lusignan,
Joseph Kwon,
Vasa Curcin,
Rory J O'Connor,
Brendan Delaney,
Clare Rayner,
Erik Mayer,
Gayathri Delanerolle,
Manoj Sivan,
Daryl O’Connor,
Mike Horton,
Sarah Elkin,
Julie Lorraine Darbyshire,
Mauricio Barahona,
Nawar Diar Bakerly,
Darren Greenwood,
Rachael Evans,
Ruairidh Milne,
Anton Pick,
Ghazala Mir,
Nikki Smith,
Amy Parkin,
Stephen Halpin,
Nick Preston,
Alexander Casson,
Harsha Master,
Emma Tucker,
Zaccheus Falope,
Jacqui Morris,
Amy Rebane,
Ana Belen Espinosa Gonzalez,
Sareeta Baley,
Annette Rolls,
Emily Bullock,
Megan Ball,
Shehnaz Bashir,
Joanne Elwin,
Denys Prociuk,
Darren Greenwood Ben Glampson,
Mae Mansoubi
Affiliations
The Royal College of Emergency Medicine, London, London, UK
Samantha Jones
1 Division of Nursing, Midwifery and Social Work, Faculty of Biology, Medicine and Health, School of Health Sciences, University of Manchester, Manchester, UK
Helen Davies
The Wellcome Trust Sanger Institute, Hinxton, Cambridge, UK
Stavros Petrou
Nuffield Department of Primary Care and Health Science, Oxford University, Oxford, UK
Simon de Lusignan
Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
Carlos Echevarria
Respiratory Department, Royal Victoria Infirmary, Newcastle upon Tyne, UK
Iram Qureshi
2 Naval Medical Research Unit San Antonio, San Antonio, Texas, USA
Trisha Greenhalgh
professor of Primary Care Health Sciences
Jonathan Clarke
Department of Mathematics, Imperial College London, London, UK
Helen Dawes
Medical School, University of Exeter, Exeter, UK
Simon de Lusignan
1 Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
Joseph Kwon
2 School of Health and Related Research, The University of Sheffield, Sheffield, UK
Vasa Curcin
Department of Population Health Sciences, King`s College London, London, UK
Rory J O'Connor
7 Academic Department of Rehabilitation Medicine, Faculty of Medicine and Health, University of Leeds, Leeds, UK
Brendan Delaney
professor of medical informatics and decision making
Clare Rayner
person with long covid
Erik Mayer
NIHR Imperial Patient Safety Translational Research Centre, Institute of Global Health Innovation, Imperial College London, London, UK
Gayathri Delanerolle
Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
Manoj Sivan
Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK
Daryl O’Connor
School of Psychology, University of Leeds, Leeds, UK
Mike Horton
Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK
Sarah Elkin
9 Respiratory Medicine, Imperial College Healthcare NHS Trust, London, UK
Julie Lorraine Darbyshire
Department of Primary Care Health Sciences, Oxford University, Oxford, UK
Mauricio Barahona
Department of Mathematics, Imperial College London, London, UK
Nawar Diar Bakerly
Northern Care Alliance NHS Foundation Trust, Salford Royal Hospital, Salford, UK
Darren Greenwood
Leeds Institute for Data Analytics, University of Leeds, Leeds, UK
Rachael Evans
The Institute for Lung Health, University of Leicester, Leicester, UK
Ruairidh Milne
professorial fellow in public health and director
Anton Pick
consultant in rehabilitation medicine
Ghazala Mir
professor of health equity and inclusion
Nikki Smith
lived experience expert
Amy Parkin
occupational therapist
Stephen Halpin
consultant in rehabilitation medicine
Nick Preston
Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK
Alexander Casson
Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK
Harsha Master
general practitioner
Emma Tucker
Academic Respiratory Unit, University of Bristol, Bristol, UK
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, ISRCTN15022307.
