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

IntroductionLong 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, includin...

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Published inBMJ open Vol. 12; no. 5; p. e063505
Main Authors Sivan, Manoj, Greenhalgh, Trisha, Darbyshire, Julie Lorraine, Mir, Ghazala, O'Connor, Rory J, Dawes, Helen, Greenwood, Darren, O’Connor, Daryl, Horton, Mike, Petrou, Stavros, de Lusignan, Simon, Curcin, Vasa, Mayer, Erik, Casson, Alexander, Milne, Ruairidh, Rayner, Clare, Smith, Nikki, Parkin, Amy, Preston, Nick, Delaney, Brendan, Bakerly, Nawar Diar, Barahona, Mauricio, Clarke, Jonathan, Davies, Helen, Echevarria, Carlos, Elkin, Sarah, Evans, Rachael, Falope, Zaccheus, Ben Glampson, Darren Greenwood, Halpin, Stephen, Kwon, Joseph, Lusignan, Simon de, Delanerolle, Gayathri, Master, Harsha, Morris, Jacqui, Pick, Anton, Rebane, Amy, Tucker, Emma, Espinosa Gonzalez, Ana Belen, Baley, Sareeta, Rolls, Annette, Bullock, Emily, Ball, Megan, Bashir, Shehnaz, Mansoubi, Mae, Elwin, Joanne, Prociuk, Denys, Qureshi, Iram, Jones, Samantha
Format Journal Article
LanguageEnglish
Published England British Medical Journal Publishing Group 17.05.2022
BMJ Publishing Group LTD
BMJ Publishing Group
SeriesProtocol
Subjects
Online AccessGet full text
ISSN2044-6055
2044-6055
DOI10.1136/bmjopen-2022-063505

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Abstract IntroductionLong 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 analysisThis 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 disseminationLOng 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.
AbstractList 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.
IntroductionLong 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 analysisThis 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 disseminationLOng 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.
IntroductionLong 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 analysisThis 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 disseminationLOng 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 numberNCT05057260, ISRCTN15022307.
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. 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. 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. NCT05057260, ISRCTN15022307.
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.INTRODUCTIONLong 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.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.METHODS AND ANALYSISThis 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.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.ETHICS AND DISSEMINATIONLOng 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.NCT05057260, ISRCTN15022307.TRIAL REGISTRATION NUMBERNCT05057260, ISRCTN15022307.
Author Rayner, Clare
Delaney, Brendan
Petrou, Stavros
Falope, Zaccheus
Mansoubi, Mae
Curcin, Vasa
Sivan, Manoj
Prociuk, Denys
Elwin, Joanne
O'Connor, Rory J
Delanerolle, Gayathri
O’Connor, Daryl
Mayer, Erik
Espinosa Gonzalez, Ana Belen
Evans, Rachael
Echevarria, Carlos
Kwon, Joseph
Jones, Samantha
Tucker, Emma
Smith, Nikki
Master, Harsha
Horton, Mike
Pick, Anton
Clarke, Jonathan
Milne, Ruairidh
Bashir, Shehnaz
Davies, Helen
Greenhalgh, Trisha
Mir, Ghazala
Dawes, Helen
Bakerly, Nawar Diar
Rebane, Amy
Lusignan, Simon de
Greenwood, Darren
Baley, Sareeta
Qureshi, Iram
Elkin, Sarah
Bullock, Emily
Rolls, Annette
Morris, Jacqui
Casson, Alexander
Ball, Megan
Parkin, Amy
Ben Glampson, Darren Greenwood
Preston, Nick
Halpin, Stephen
Barahona, Mauricio
de Lusignan, Simon
Darbyshire, Julie Lorraine
AuthorAffiliation 8 Department of Primary Care and Public Health Sciences , King's College London , London , UK
4 College of Medicine and Health , University of Exeter , Exeter , UK
5 Leeds Institute for Data Analytics , University of Leeds , Leeds , UK
10 Department of Electrical and Electronic Engineering , The University of Manchester , Manchester , UK
12 Long Covid Support , Leeds , UK
6 School of Psychology , University of Leeds , Leeds , UK
2 Nuffield Department of Primary Care Health Sciences , University of Oxford , Oxford , UK
14 Department of Occupational Therapy , Leeds Teaching Hospitals NHS Trust , Leeds , UK
7 Department of Clinical and Experimental Medicine , University of Surrey , Guildford , UK
9 Department of Biosurgery and Surgical Technology , Imperial College London , London , UK
1 Academic Department of Rehabilitation Medicine , University of Leeds , Leeds , UK
15 Department of Surgery and Cancer , Imperial College London , London , UK
13 Long Covid Support , London , UK
3 Leeds Institute of He
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– name: 8 Department of Primary Care and Public Health Sciences , King's College London , London , UK
– name: 14 Department of Occupational Therapy , Leeds Teaching Hospitals NHS Trust , Leeds , UK
– name: 2 Nuffield Department of Primary Care Health Sciences , University of Oxford , Oxford , UK
– name: 4 College of Medicine and Health , University of Exeter , Exeter , UK
– name: 12 Long Covid Support , Leeds , UK
– name: 6 School of Psychology , University of Leeds , Leeds , UK
– name: 7 Department of Clinical and Experimental Medicine , University of Surrey , Guildford , UK
– name: 1 Academic Department of Rehabilitation Medicine , University of Leeds , Leeds , UK
– name: 11 Public Health, Wessex Institute , University of Southampton , Southampton , UK
– name: 9 Department of Biosurgery and Surgical Technology , Imperial College London , London , UK
– name: 10 Department of Electrical and Electronic Engineering , The University of Manchester , Manchester , UK
– name: 3 Leeds Institute of Health Sciences , University of Leeds , Leeds , UK
– name: 15 Department of Surgery and Cancer , Imperial College London , London , UK
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  organization: Department of Biosurgery and Surgical Technology, Imperial College London, London, UK
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  organization: Academic Department of Rehabilitation Medicine, University of Leeds, Leeds, UK
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  organization: Department of Surgery and Cancer, Imperial College London, London, UK
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  givenname: Darren Greenwood
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  givenname: Harsha
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  givenname: Jacqui
  surname: Morris
  fullname: Morris, Jacqui
– sequence: 43
  givenname: Amy
  surname: Parkin
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  givenname: Anton
  surname: Pick
  fullname: Pick, Anton
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  givenname: Nick
  surname: Preston
  fullname: Preston, Nick
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  givenname: Amy
  surname: Rebane
  fullname: Rebane, Amy
– sequence: 47
  givenname: Emma
  surname: Tucker
  fullname: Tucker, Emma
– sequence: 48
  givenname: Ana Belen
  surname: Espinosa Gonzalez
  fullname: Espinosa Gonzalez, Ana Belen
– sequence: 49
  givenname: Sareeta
  surname: Baley
  fullname: Baley, Sareeta
– sequence: 50
  givenname: Annette
  surname: Rolls
  fullname: Rolls, Annette
– sequence: 51
  givenname: Emily
  surname: Bullock
  fullname: Bullock, Emily
– sequence: 52
  givenname: Megan
  surname: Ball
  fullname: Ball, Megan
– sequence: 53
  givenname: Shehnaz
  surname: Bashir
  fullname: Bashir, Shehnaz
– sequence: 54
  givenname: Mae
  surname: Mansoubi
  fullname: Mansoubi, Mae
– sequence: 55
  givenname: Joanne
  surname: Elwin
  fullname: Elwin, Joanne
– sequence: 56
  givenname: Denys
  surname: Prociuk
  fullname: Prociuk, Denys
– sequence: 57
  givenname: Iram
  surname: Qureshi
  fullname: Qureshi, Iram
– sequence: 58
  givenname: Samantha
  surname: Jones
  fullname: Jones, Samantha
BackLink https://www.ncbi.nlm.nih.gov/pubmed/35580970$$D View this record in MEDLINE/PubMed
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– ident: 2022112903202539000_12.5.e063505.17
– volume: 10
  year: 2021
  ident: 2022112903202539000_12.5.e063505.38
  article-title: Addressing the long COVID crisis: integrative health and long COVID
  publication-title: Glob Adv Health Med
  doi: 10.1177/21649561211056597
– volume: 94
  start-page: 727
  year: 2020
  ident: 2022112903202539000_12.5.e063505.25
  article-title: Epidemic time: thinking from the Sickbed
  publication-title: Bull Hist Med
  doi: 10.1353/bhm.2020.0093
– ident: 2022112903202539000_12.5.e063505.53
  doi: 10.3390/ijerph17186476
– ident: 2022112903202539000_12.5.e063505.34
– volume: 6
  start-page: 796
  year: 2021
  ident: 2022112903202539000_12.5.e063505.5
  article-title: Postacute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 Infection: A State-of-the-Art Review
  publication-title: JACC Basic Transl Sci
  doi: 10.1016/j.jacbts.2021.07.002
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Snippet IntroductionLong COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most...
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...
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...
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SubjectTerms Clinical outcomes
Clinics
Co-design
Collaboration
Cost analysis
COVID-19
COVID-19 - complications
COVID-19 - therapy
Goal setting
health economics
Health services
health services administration & management
Humans
Infectious Diseases
Locomotion
Long COVID
Mixed methods research
Patients
Post-Acute COVID-19 Syndrome
Primary care
qualitative research
Quality improvement
Quality of life
Rehabilitation
rehabilitation medicine
State Medicine
United Kingdom
Workforce planning
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Title LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK
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Volume 12
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