Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol
Introduction Poor chest health is the leading cause of early mortality in children with cerebral palsy (CP). It is also the most common reason to seek healthcare, accruing significant costs and reducing quality-of-life for children and families. Clinical trials examining chest health interventions i...
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BMJ Publishing Group
2025-08-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/15/8/e105309.full |
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| author | Jos Latour Noula Gibson Harriet Shannon Christopher Morris Paul McNamara Diane Sellers Rachel Rapson Madeline Pilbury Samantha Grace Laura Lowndes Julia Melluish Rachel Knight Lozano Kayleigh Bell Hugh Malyon Morag Andrews Sarah Crombie Sian Goddard Sarah McGoldrick Kolawole Nicola Scivier Caroline Weighton Luana Winston |
| author_facet | Jos Latour Noula Gibson Harriet Shannon Christopher Morris Paul McNamara Diane Sellers Rachel Rapson Madeline Pilbury Samantha Grace Laura Lowndes Julia Melluish Rachel Knight Lozano Kayleigh Bell Hugh Malyon Morag Andrews Sarah Crombie Sian Goddard Sarah McGoldrick Kolawole Nicola Scivier Caroline Weighton Luana Winston |
| collection | DOAJ |
| description | Introduction Poor chest health is the leading cause of early mortality in children with cerebral palsy (CP). It is also the most common reason to seek healthcare, accruing significant costs and reducing quality-of-life for children and families. Clinical trials examining chest health interventions in CP are characterised by inconsistent outcome measures, limiting the capacity for evidence synthesis to inform clinical application. The study aims to develop a core outcome set (COS) and related measurement instruments to assess, monitor and evaluate chest health in children with CP, both in research and routine clinical practice. The COS will reflect the views of children, young people, parent/carers, clinicians and researchers, emphasising under-represented groups in research and those at risk of poorer chest health.Methods and analysis A 3-phase methodology will be conducted in line with the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. (1) Candidate outcomes will be identified through a qualitative evidence synthesis and interviews with key stakeholders. Findings will be mapped to COMET-taxonomy, generating a list of candidate outcomes. (2) An international e-Delphi survey will invite stakeholders to rate the importance of each outcome, followed by a consensus meeting to ratify the COS. (3) A structured review, guided by health measurement taxonomy, will evaluate relevant instruments, with a final meeting to agree on recommended measures for each COS domain.Ethics and dissemination Ethical approval was provided by the University of Plymouth Research Ethics Committee for the qualitative interview study (ID5116), e-Delphi study and consensus meeting (ID5636). Study findings will be published open access in a peer-reviewed journal and presented at relevant national and international conferences.Study registration COMET registration: 2590 (https://www.comet-initiative.org/Studies/Details/2590)PROSPERO registration number CRD42024562735. |
| format | Article |
| id | doaj-art-7ba53bf80b3d4317b92da06cac442b8d |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-7ba53bf80b3d4317b92da06cac442b8d2025-08-20T03:41:50ZengBMJ Publishing GroupBMJ Open2044-60552025-08-0115810.1136/bmjopen-2025-105309Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol 0Jos Latour1Noula Gibson2Harriet Shannon3Christopher Morris4Paul McNamara5Diane Sellers6Rachel Rapson7Madeline Pilbury8Samantha Grace9Laura Lowndes10Julia Melluish11Rachel Knight Lozano12Kayleigh Bell13Hugh Malyon14Morag AndrewsSarah CrombieSian GoddardSarah McGoldrick KolawoleNicola ScivierCaroline WeightonLuana Winston8 DASH, DASH, DASH, UKFaculty of Health, University of Plymouth, Plymouth, UKTelethon Kids Institute, Nedlands, Western Australia, AustraliaUCL Great Ormond Street Institute of Child Health, University College London, London, UK2Peninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School1 Respiratory Unit, Alder Hey Children`s NHS Foundation Trust, Liverpool, Merseyside, UK4Sussex Community NHS Foundation Trust, Chailey Clinical Services2 Faculty of Health and human Sciences, University of Plymouth, Plymouth, UKStockport NHS Foundation TrustStockport NHS Foundation TrustStockport NHS Foundation TrustPeninsula Childhood Disability Research Unit, University of Exeter, Exeter, UKUniversity of Plymouth, Plymouth, UKPublic Contributor, Exeter, UKPublic Contributor, Torbay, UKIntroduction Poor chest health is the leading cause of early mortality in children with cerebral palsy (CP). It is also the most common reason to seek healthcare, accruing significant costs and reducing quality-of-life for children and families. Clinical trials examining chest health interventions in CP are characterised by inconsistent outcome measures, limiting the capacity for evidence synthesis to inform clinical application. The study aims to develop a core outcome set (COS) and related measurement instruments to assess, monitor and evaluate chest health in children with CP, both in research and routine clinical practice. The COS will reflect the views of children, young people, parent/carers, clinicians and researchers, emphasising under-represented groups in research and those at risk of poorer chest health.Methods and analysis A 3-phase methodology will be conducted in line with the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. (1) Candidate outcomes will be identified through a qualitative evidence synthesis and interviews with key stakeholders. Findings will be mapped to COMET-taxonomy, generating a list of candidate outcomes. (2) An international e-Delphi survey will invite stakeholders to rate the importance of each outcome, followed by a consensus meeting to ratify the COS. (3) A structured review, guided by health measurement taxonomy, will evaluate relevant instruments, with a final meeting to agree on recommended measures for each COS domain.Ethics and dissemination Ethical approval was provided by the University of Plymouth Research Ethics Committee for the qualitative interview study (ID5116), e-Delphi study and consensus meeting (ID5636). Study findings will be published open access in a peer-reviewed journal and presented at relevant national and international conferences.Study registration COMET registration: 2590 (https://www.comet-initiative.org/Studies/Details/2590)PROSPERO registration number CRD42024562735.https://bmjopen.bmj.com/content/15/8/e105309.full |
| spellingShingle | Jos Latour Noula Gibson Harriet Shannon Christopher Morris Paul McNamara Diane Sellers Rachel Rapson Madeline Pilbury Samantha Grace Laura Lowndes Julia Melluish Rachel Knight Lozano Kayleigh Bell Hugh Malyon Morag Andrews Sarah Crombie Sian Goddard Sarah McGoldrick Kolawole Nicola Scivier Caroline Weighton Luana Winston Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol BMJ Open |
| title | Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol |
| title_full | Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol |
| title_fullStr | Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol |
| title_full_unstemmed | Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol |
| title_short | Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol |
| title_sort | core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting the chesti study protocol |
| url | https://bmjopen.bmj.com/content/15/8/e105309.full |
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