BMJ Open (Aug 2023)
Digital home monitoring for capturing daily fluctuation of symptoms; a longitudinal repeated measures study: Long Covid Multi-disciplinary Consortium to Optimise Treatments and Services across the NHS (a LOCOMOTION study)
- Samantha Jones,
- Helen Davies,
- Stavros Petrou,
- Simon de Lusignan,
- Carlos Echevarria,
- Iram Qureshi,
- Trisha Greenhalgh,
- Jonathan Clarke,
- Johnny Collett,
- Helen Dawes,
- Ben Glampson,
- Joseph Kwon,
- Vasa Curcin,
- Brendan Delaney,
- Clare Rayner,
- Erik Mayer,
- Gayathri Delanerolle,
- Manoj Sivan,
- Daryl O’Connor,
- Darren C Greenwood,
- Mike Horton,
- Sarah Elkin,
- Mauricio Barahona,
- Nawar Diar Bakerly,
- Rachael Evans,
- Ruairidh Milne,
- Anton Pick,
- Ghazala Mir,
- Joanna Dawes,
- Amy Parkin,
- Stephen Halpin,
- Nick Preston,
- Alexander Casson,
- Tomas Ward,
- Harsha Master,
- Emma Tucker,
- Maedeh Mansoubi,
- Aishwarya Bhatia,
- Himanshu Vashisht,
- Leisle Ezekiel,
- Phaedra Leveridge,
- Flo Read,
- Ian Tuckerbell,
- Willie Muhlhausen,
- Zaccheus Falope,
- Jacqui Morris,
- Amy Rebane,
- Ana Belen Espinosa Gonzalez,
- Sareeta Baley,
- Annette Rolls,
- Emily Bullock,
- Megan Ball,
- Shehnaz Bashir,
- Joanne Elwin,
- Denys Prociuk
Affiliations
- 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
- 1 Respiratory Department, Royal Victoria Infirmary, Newcastle upon Tyne, UK
- Iram Qureshi
- Biomaterials and Epidemiology, 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
- Johnny Collett
- Department of Sport, Health and Social Work, Oxford Brookes University, Oxford, UK
- Helen Dawes
- Medical School, University of Exeter, Exeter, UK
- Ben Glampson
- NIHR Imperial Biomedical Research Centre, London, 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
- Brendan Delaney
- professor of medical informatics and decision making
- Clare Rayner
- person with long covid
- Erik Mayer
- Patient Safety Translational Research Centre, Imperial College of Science Technology and Medicine, London, UK
- Gayathri Delanerolle
- 5 University of Birmingham, Birmingham, 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
- Darren C Greenwood
- Academic Department of Rehabilitation Medicine, 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
- Mauricio Barahona
- Department of Mathematics, Imperial College London, London, UK
- Nawar Diar Bakerly
- Northern Care Alliance NHS Foundation Trust, Salford Royal Hospital, Salford, 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
- Joanna Dawes
- Medical School, University of Exeter, Exeter, UK
- Amy Parkin
- occupational therapist
- Stephen Halpin
- consultant in rehabilitation medicine
- Nick Preston
- Alexander Casson
- Tomas Ward
- Insight SFI Research Centre for Data Analytics, Dublin City University, Dublin, Ireland
- Harsha Master
- general practitioner
- Emma Tucker
- Academic Respiratory Unit, University of Bristol, Bristol, UK
- Maedeh Mansoubi
- 2 Medical School, University of Exeter, Exeter, UK
- Aishwarya Bhatia
- Medical School, University of Exeter, Exeter, UK
- Himanshu Vashisht
- In The Wild Research Limited, Dublin, Ireland
- Leisle Ezekiel
- School of Health Sciences, University of Southampton, Southampton, UK
- Phaedra Leveridge
- Department of Public Health and Sport Sciences, University of Exeter, Exeter, UK
- Flo Read
- Department of Health and Community Sciences, University of Exeter, Exeter, UK
- Ian Tuckerbell
- Patient Advisory Group (PAG) Representative, Leeds, UK
- Willie Muhlhausen
- In The Wild Research Limited, Dublin, Ireland
- Zaccheus Falope
- Jacqui Morris
- Amy Rebane
- Ana Belen Espinosa Gonzalez
- Sareeta Baley
- person with long covid
- Annette Rolls
- Emily Bullock
- Megan Ball
- 1Providence Cancer Institute, Portland, OR, USA
- Shehnaz Bashir
- Joanne Elwin
- Denys Prociuk
- DOI
- https://doi.org/10.1136/bmjopen-2022-071428
- Journal volume & issue
-
Vol. 13,
no. 8
Abstract
Introduction A substantial proportion of COVID-19 survivors continue to have symptoms more than 3 months after infection, especially of those who required medical intervention. Lasting symptoms are wide-ranging, and presentation varies between individuals and fluctuates within an individual. Improved understanding of undulation in symptoms and triggers may improve efficacy of healthcare providers and enable individuals to better self-manage their Long Covid. We present a protocol where we aim 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.Methods and analysis This study is a longitudinal prospective cohort study of adults with Long Covid accessing 10 National Health Service (NHS) rehabilitation services in the UK. We aim to recruit 400 people from participating NHS sites. At referral to study, 6 weeks and 12 weeks, participants will complete demographic data (referral to study) and clinical outcome measures, including ecological momentary assessment (EMA) using personal mobile devices. EMA items are adapted from the COVID-19 Yorkshire Rehabilitation Scale items and include self-reported activities, symptoms and psychological factors. Passive activity data will be collected through wrist-worn sensors. We will use latent class growth models to identify trajectories of experience, potential phenotypes defined by co-occurrence of symptoms and inter-relationships between stressors, symptoms and participation in daily activities. We anticipate that n=300 participants provide 80% power to detect a 20% improvement in fatigue over 12 weeks in one class of patients relative to another.Ethics and dissemination The study was approved by the Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Findings will be disseminated in peer-reviewed publications and presented at conferences.Trial registration number ISRCTN15022307.