A systematic review of measures for the core outcomes of chest health in children and young people with cerebral palsy: a protocol

Rachel Knight Lozano; Jos M. Latour; Noula Gibson; Karen van Hulst; Michelle McInerney; Nicola Scivier; Diane Sellers; Christopher Morris; Harriet Shannon

doi:10.3310/nihropenres.14471.1

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Study Protocol

A systematic review of measures for the core outcomes of chest health in children and young people with cerebral palsy: a protocol

[version 1; peer review: awaiting peer review]

Rachel Knight Lozano ¹, Jos M. Latour^2-4, Noula Gibson⁵, [...] Karen van Hulst⁶, Michelle McInerney^7-9, Nicola Scivier¹⁰, Diane Sellers¹¹, Christopher Morris¹², Harriet Shannon¹³

Rachel Knight Lozano ¹, Jos M. Latour^2-4, [...] Noula Gibson⁵, Karen van Hulst⁶, Michelle McInerney^7-9, Nicola Scivier¹⁰, Diane Sellers¹¹, Christopher Morris¹², Harriet Shannon¹³

PUBLISHED 23 Oct 2026

Author details Author details

¹ University of Plymouth School of Health Professions, Plymouth, England, UK
² University of Plymouth School of Nursing and Midwifery, Plymouth, England, UK
³ Nursing Department, Zhongshan Hospital Fudan University, Shanghai, Shanghai, China
⁴ Curtin University School of Nursing, Bentley, Western Australia, Australia
⁵ Perth Children's Hospital, Perth, Western Australia, Australia
⁶ Radboud UMC, Nijmegen, The Netherlands
⁷ Sydney Children’s Hospitals Network, New South Wales, Australia
⁸ University of New South Wales School of Clinical Medicine, Sydney, New South Wales, Australia
⁹ University College London Faculty of Brain Sciences, London, England, UK
¹⁰ Treloar School and College, Hampshire, UK
¹¹ Sussex Community NHS Foundation Trust, Brighton, England, UK
¹² University of Exeter Medical School, Peninsula Childhood Disability Research Unit, Exeter, UK
¹³ UCL Great Ormond Street Institute of Child Health, London, England, UK

Rachel Knight Lozano
Roles: Conceptualization, Formal Analysis, Funding Acquisition, Investigation, Methodology, Project Administration, Software, Writing – Original Draft Preparation, Writing – Review & Editing

Jos M. Latour
Roles: Conceptualization, Formal Analysis, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

Noula Gibson
Roles: Conceptualization, Formal Analysis, Methodology, Writing – Review & Editing

Karen van Hulst
Roles: Conceptualization, Formal Analysis, Methodology, Writing – Review & Editing

Michelle McInerney
Roles: Conceptualization, Methodology, Project Administration, Software, Writing – Review & Editing

Nicola Scivier
Roles: Conceptualization, Formal Analysis, Methodology, Writing – Review & Editing

Diane Sellers
Roles: Conceptualization, Formal Analysis, Methodology, Writing – Review & Editing

Christopher Morris
Roles: Conceptualization, Formal Analysis, Methodology, Supervision, Writing – Review & Editing

Harriet Shannon
Roles: Conceptualization, Formal Analysis, Methodology, Supervision, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS AWAITING PEER REVIEW

Abstract

Background

A core outcome set (COS) for chest health in children and young people with cerebral palsy (CP) has been developed for use in research and routine clinical care. Three core outcomes were agreed: the views of the child, young person and/or parent/carer, chest infection(s), and swallow safety. The next methodological stage is to identify how to measure the COS, by developing a core outcome measurement set (COMS). This can improve consistency, comparability and quality of outcome reporting of these outcomes. Selection of these measures requires evaluation of their measurement properties for children and young people with CP within a community setting.

Aim

To systematically identify outcome measurement instruments, critically appraise their measurement properties and, where possible, recommend a feasible and acceptable COMS to assess the core outcomes for chest health in children and young people with CP.

Method

This protocol describes a four-step systematic review of outcome measurement instruments: (1) conceptual consideration for the three core outcomes of chest health in children and young people with CP; (2) systematic searches to identify candidate instruments; (3) quality assessment of measurement properties for candidate instruments with contextual appropriateness and face validity; (4) generic recommendations of feasible instruments for each core outcome. This team includes a lived experience research partner group, clinicians and researchers, to support each step of the methodology and dissemination of findings.

Ethics and dissemination

Ethical approval is not required for this systematic review. The results of the review will be reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 statement. The findings will be reported in an open access publication and in a plain language summary document.

Plain Language Summary

Background

Children and young people with cerebral palsy (CP) can have problems with their chest health. A core outcome set (COS) has been developed to agree which outcomes are most important to measure in chest health research and healthcare. Three outcomes were agreed as most important: the views of the child, young person and/or parent/carer about their chest health; chest infections; and swallowing safely. The next step is to find the most suitable ways to measure these outcomes.

Aim

This review will identify and assess ways of measuring the three core outcomes. We will look at whether measures are suitable for children and young people with CP, measure what they are intended to measure, and are practical to use in community healthcare. Where possible, we will identify measures that could be recommended for use in research and healthcare.

What will we do?

We will:

1.
Explore what each outcome means in relation to chest health and CP.
2.
Search for existing ways of measuring these outcomes.
3.
Assess whether the measures work well, are suitable for children and young people with CP, and are acceptable and practical to use in community healthcare.
4.
Bring the findings together to identify measures that could be recommended for each outcome.

Young people and parents/carers with lived experience, community healthcare professionals and researchers will contribute to the review. They will help us consider whether measures are meaningful, suitable and practical, and help share the findings.

Keywords

Children, young people, cerebral palsy, chest health, outcomes, measurement instruments, systematic review

Corresponding author: Rachel Knight Lozano

Competing interests: No competing interests were disclosed.

Grant information: This project is funded by the National Institute for Health and Care Research (NIHR) under its Doctoral Integrated Clinical Academic Research Fellowship (Grant Reference Number: NIHR303546). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright: © 2026 Knight Lozano R et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

How to cite: Knight Lozano R, Latour JM, Gibson N et al. A systematic review of measures for the core outcomes of chest health in children and young people with cerebral palsy: a protocol [version 1; peer review: awaiting peer review]. NIHR Open Res 2026, 6:185 (https://doi.org/10.3310/nihropenres.14471.1) First published: 23 Oct 2026, 6:185 (https://doi.org/10.3310/nihropenres.14471.1) Latest published: 23 Oct 2026, 6:185 (https://doi.org/10.3310/nihropenres.14471.1)

Introduction

Respiratory illness is the primary cause of morbidity and early mortality in children with CP. ¹ While children with CP are not often born with intrinsic lung disease, a combination of primary neuro-respiratory interactions, condition-specific co-morbidities, and wider determinants of health have a cumulative impact on respiratory health across the lifespan.²^–⁴ Many of these factors are modifiable, providing an opportunity to implement preventative models of care along a continuum from respiratory health to disease.⁵ Strategies include anticipatory monitoring, timely decision-making and early interventions, all of which rely on the measurement of meaningful and feasible outcomes, considered important to children with CP and their families.⁶

In research, outcome measures are used to evaluate the effects of interventions (e.g. in clinical trials) or help understand the natural progression, lived experience, and real world patterns of a health condition (e.g. longitudinal observational studies).⁷^,⁸ In routine clinical care, outcome measures prompt timely decisions, inform management approaches and evaluate their impact in the real-world.⁹ Within the context of respiratory health in children with CP, previous systematic and scoping reviews have highlighted inconsistency in both the outcome and its associated measurement selection, with additional concerns raised about validity, reliability and feasibility of measurement instruments used.¹⁰^–¹⁶ This has restricted the synthesis of comparable studies, reduced methodological quality, and presented barriers to research participation in children more severely affected by their CP.¹⁷

To address this challenge, we developed a core outcome set (COS), defined as a minimum set of standardised outcomes, to be measured in research and/or routine clinical care.¹⁸ COS development incorporated the views of children, young people, families, community-based professionals and researchers, to ensure the selection of outcomes was meaningful and relevant across a heterogeneous population of children and young people with CP. ¹⁹ The study reached consensus on twelve comprehensive outcomes and three core outcomes, which were 1) views of the child, young person and/or parent/carer, 2) chest infections, and 3) swallow safety. While this COS provides researchers and clinicians with a shared understanding of what outcomes are most important, methods of measuring each outcome may vary in selection, based on relevance, psychometric properties and feasibility.¹⁸ This is particularly important to address, given that previous CP research has often prioritised methodological measurement rigour over feasibility, such as lung function measures, which may be inaccessible to children with more complex needs, including those at greatest risk of morbidity and mortality.¹⁷

While, to date, our work has informed ‘what’ to measure, the next stage in this methodological process is to establish ‘how’ best to measure the COS, referred to as a core outcome measurement set (COMS). Developing a COMS involves identifying existing outcome measurement instruments (OMIs), evaluating their measurement properties, and determining their feasibility to implement with the intended population of children and young people with CP, residing in a community setting. Consistent use of agreed COMS can enhance the quality, relevance, and comparability of research needed to advance evidence-based practice.²⁰ This protocol outlines the process for identifying, appraising, and recommending OMIs for each core outcome considered essential for assessing chest health in children and young people with CP.

Aim and objectives

Our aim is to systematically identify OMIs, critically appraise their measurement properties and where the evidence permits, recommend a feasible and acceptable COMS for evaluating three core outcomes: 1) child, young person and/or parent/carers views, 2) chest infections, and 3) swallow safety in children and young people aged 1-18 years with CP, within the community setting. The COMS will be used in both research and routine clinical care. This will be achieved through four objectives:

I. To identify OMIs used to assess (1) child, young person and/or parent/carer views; (2) chest infections and (3) swallow safety in children and young people with CP.
II. Assess the face validity and contextual appropriateness of each OMI in relation to the core outcome definitions and the scope (population, health condition and context).
III. For OMIs with established face validity and contextual appropriateness, identify, extract and evaluate the quality of psychometric properties (validity, reliability and responsiveness) in children and young people with CP.
IV. Assess the feasibility, acceptability and interpretability of implementing the OMIs in research and routine clinical care.

Method

Methodological framework

The review methodology is underpinned by a collaborative four-step framework developed by Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) and Core Outcome Measures in Effectiveness Trials (COMET).²⁰^,²¹ While this four-step COSMIN-COMET framework provides a rigorous approach to assessing specific psychometric properties of validity, reliability, and responsiveness, the framework is less attentive to the real-world applicability in children with CP. This is particularly important within this COS scope due to its dual application in research and routine clinical care. Moreover, the feasibility and accessibility of some OMIs may vary according to a child’s communication, cognitive, and motor needs.¹⁷ To address this, contextual appropriateness, interpretability, acceptability, and feasibility have been adopted from Fitzpatrick et al., as additional criteria for evaluating OMI properties.²² The COMET-COSMIN method is illustrated in Figure 1 and the criteria for evaluating OMIs are presented in Figure 2.

Figure 1. Modified COSMIN-COMET framework for identifying, evaluating and recommending OMIs.

Figure 2. Criteria for evaluating OMIs based on COSMIN Manual³⁰ and additional criteria by Fitzpatrick et al. ²²

This protocol has been registered on Prospero (ID CRD420261477691) and published as part of a broader study protocol in the COMET database in line with the COS-Standardised Protocol Items guidelines (https://www.comet-initiative.org/Studies/Details/2590).²³ The full systematic review will be reported using PRISMA-COSMIN guideline.²⁴^–²⁶ Ethical approval was not required for this systematic review protocol because it proposes to use data from previously published studies and does not involve the recruitment or direct involvement of human participants.

Patient and public involvement

Nine public research partners will contribute to the review as members of the systematic review expert group. The group includes two young people and seven parent/carers with lived experience (NGi, HM, JM, KB, GU, AW, TDeM, SMcG, MD). Collectively, members bring varied experiences of CP and associated chest health, reflecting differences in age, severity and geographical location across the UK and Europe. All members have contributed to the development of the COS definitions, constructs and scope, which informed the conceptual definitions used in Step 1. They have also contributed to the screening process, to identify relevant sources of evidence in Step 2. Focused involvement of public research partners will include assessment of the contextual appropriateness and face validity of candidate OMIs (Step 2), and assessment of their feasibility, interpretability and acceptability (Step 3). All members will also contribute to the overall quality evaluation and development of generic recommendations for OMIs (Step 4). Contributions will be reported for each step of the process using a modified version of the GRIPP2 short form (refer to Extended Data Table 1).²⁷

Table 1. Outcomes, Definitions and Constructs.

Outcome	Construct (s)	Conceptual Definition
Child, young person and/or parent/carer views	Child/young person’s perceptions of their own chest health Parent/carer perceptions of their child/young person’s chest health A combination of the above constructs	The child, young person and/or parent/carer views thoughts and feelings about their own, or their child/young person’s, chest health.
Chest infections	Frequency Severity Signs or symptoms profile	Inflammation or infection of the lungs or large airways caused by viral or bacterial pathogens. Change in symptoms from individual baseline may include, but not limited to cough, mucus, fever, chest discomfort, breathlessness or other associated signs or symptoms.
Swallow safety	Signs or symptoms of residue and/or aspiration	Movement of food, fluid, saliva, medication or reflux material between the mouth and the oesophagus safely and efficiently, without airway entry or associated signs or symptoms of residue and/or aspiration.

Academic and clinical expertise

Nine professionals with clinical and/or research expertise in chest health, childhood-onset disability and COS methodology will contribute to the systematic review expert group (RKL, NS, NG, KvH, MM, DS, JL, HS, JML). The group represents a range of disciplinary perspectives and methodological expertise relevant to the review. Professional members will contribute to the identification and screening of relevant reviews and studies and assessment of the contextual appropriateness and face validity of candidate OMIs (Step 2). Members will also contribute to data extraction and critical appraisal of measurement properties (Step 3). All members of the review expert group will contribute to the overall quality evaluation and development of generic recommendations for OMIs (Step 4) (refer to Extended Data Table 1).

Step 1 Conceptual considerations

Step 1 defines each outcome, its associated constructs to be measured, and the scope for intended use. These components provide the conceptual foundation for identifying and evaluating relevant OMIs, in line with COSMIN guidance.²¹ Three outcomes were agreed in our previous COS study: child, young person and/or parent/carer views, chest infections, and swallow safety. Their associated constructs refer to the specific aspects of each outcome that can be measured²⁰ and were informed by the previously published reviews underpinning this COS.¹⁷^,²⁸ These have shaped the conceptual definitions which will be formally reviewed and refined through systematic review expert group discussion ( Table 1).

The COMS scope describes the target population, health condition and context for eligible OMIs that evaluate one or more of the agreed core outcomes. This scope aligns with the previously developed COS scope, defined as children and young people aged 1–18 years with CP or similar neurodevelopmental conditions.²³ OMIs will be included if used within community settings, either as part of research or routine clinical care. Their purpose may be to measure the effect of an intervention intended to improve chest health or to monitor the progression of chest health in the absence of intervention. OMIs may be generic, condition-specific, or domain-specific and may be administered through performance-based assessment, observation, clinician-reported, patient-reported, or parent/carer-reported formats. The COMS scope and constructs collectively inform a COMS eligibility criteria, in which relevant studies will be identified and evaluated against ( Table 2).

Table 2. COMS Eligibility criteria.

COMS scope	Definition
Target Population	OMIs used with children and young people aged 1-18 years
Target Health Condition	OMIs used with cerebral palsy or similar neurodevelopmental conditions
Context	OMIs used within community settings, either as part of research and/or routine clinical care
COMS OMI	Definition
Core Outcome (s)	Measures one or more of the agreed core outcomes: (i) Child, young person and/or parent/carer views, or (ii) Chest infections, or (iii) Swallow Safety.
Instrument Type	Any, including generic, disease-specific or domain-specific
Administration	Any instrument type in the context of interest, including performance-based assessment, clinician-reported, patient-reported, or parent/carer-reported.

Step 2: Finding existing OMIs

Step 2 outlines a three-staged search strategy to identify OMIs for each core outcome, that have been validated to some extent, drawing on multiple information sources including systematic reviews, primary studies and the systematic review expert group.²¹ Search concepts were informed by COSMIN methodology and refined with members of the systematic review expert group and an information specialist within the lead author’s institution. Searches will be presented in a PRISMA flow diagram and reported in accordance with PRISMA guidelines (Extended Data Figure 1).²⁹

Existing systematic reviews

The first stage of searching aims to identify existing systematic reviews that evaluate OMIs related to one or more of the core outcomes. This will involve a structured search of the COMET database, COSMIN database, Cochrane Library and PROSPERO register, utilising available database filters and search terms related to the outcome and target population ( Figure 3). All retrieved studies will be uploaded to Endnote and deduplicated before being transferred to Covidence for title and abstract screening, and if eligible, full text screening, by two independent reviewers. Reviews will be included if they report on an OMI aligned to one or more of the core outcomes, target population and health condition. Discrepancies will be discussed between reviewers and resolved with a third research team member if required. Where an up-to-date systematic review of OMI’s for one or more core outcomes satisfies all COMS eligibility criteria, it will progress to systematic review expert group discussion to determine if there is a need to conduct additional primary study searches.³⁰ The justification for this decision will be explicitly documented.

Figure 3. COSMIN informed search strategy.

Identification of Primary studies

If no eligible systematic reviews are identified, systematic searches will be conducted in PubMed, EMBASE and CINAHL, and PsycINFO, to locate primary studies of candidate OMIs. Search terms will be developed for each core outcome and combined with search terms for the target population (including health condition) and COSMIN-developed measurement filter.³¹ An example search strategy for each outcome is referenced in Supplementary Information (refer to Extended Data Table 2). The child, young person and/or parent/carer views outcome will also include an additional patient-reported outcome/patient-reported experience measure filter, informed by the Patient-Reported Outcome Measurement Group, University of Oxford, given its focus on a specific instrument type.³⁰ All retrieved studies will be imported to Endnote and deduplicated being before transferred to Rayyan (Rayyan.ai) for title and abstract screening, and if eligible, full text screening, by two independent reviewers. Discrepancies will be discussed between reviewers and resolved with a third research team member if required. Eligible studies will report (i) at least one OMI linked to a core outcome, and (ii) be used with children and young people with CP (mean age <19 years). This search will be supplemented by citation screening of eligible studies, a previous scoping review¹⁷ and unstructured searches in International Consortium for Health Outcomes Measurement (ICHOM) and Patient-Reported Measures Outcomes Information System (PROMIS).

Contextual Appropriateness and Face Validity

Relevant OMIs will be extracted from all eligible studies, using a standardised, piloted data extraction form that aligns with the COMS scope and outcomes criteria, in Microsoft Excel. This will be completed by one reviewer trained in COSMIN methods and checked by a second reviewer to avoid missing any relevant information or errors. Data extraction will include OMI characteristics (name, reference, version, language, core outcome of interest, type of measure, administration details) (refer to Extended Data Table 3a) and study characteristics (author, date, target population, health condition, context) (refer to Extended Data Table 3b). This information will be presented in a table of candidate OMIs and reviewed by the systematic review expert group to identify any additional OMIs used in practice that were not captured through database searches.

Table 3. Overview Quality of Measurement Properties.

		Content validity			Validity			Reliability
		Compre hensiveness	Compre hensibility	Relevance	Structural validity	Hypothesis testing	Cross-cultural validity	Criterion validity	Reliability	Internal consistency	Measurement error	Respon siveness
Name of OMI	Quality of property	+/?/ -
Name of OMI	Quality of study	A/B/C/D/NA

Each OMI will then be assessed for contextual appropriateness as to whether the OMI is suitable for the COMS scope (population, health condition and context), and face validity as to whether the items of the OMI appear relevant to the core outcome(s) specified (refer to Extended Data Table 3c).²⁰^,²²^,³² This assessment will focus on perspectives of clinicians working with children with CP and children, young people or parents/carers with lived experience within the systematic review expert group. This step functions as a preliminary screening process to determine whether each OMI and its items adequately reflect the core outcome and the real-world context in which the OMI will be used.²² OMIs judged to have adequate appropriateness and face validity for >85% of its items will inform a selection of OMIs that will progress to psychometric evaluation in Step 3.³⁰ Measures that represent observable, countable clinical events, such as the frequency of chest infections, will be recorded as clinical event data, and not be subject to psychometric evaluation in Step 3 as they involve no indirect interpretation.

Step 3: Quality assessment of OMIs

Identification of Measurement Development Studies

Step 3 outlines the process for assessing the quality of measurement properties for all candidate OMIs with agreed appropriateness and face validity for one or more of the core outcomes.²¹ For each OMI, measurement property studies will be identified from the existing searches and supplemented using citation screening, online databases, such as the PROQOLID database of Clinical Outcome Assessments (COAs) or additional searches using the population, name of the instrument and measurement properties filter ( Figure 2).³¹ Studies will be included if they report an original instrument development, an updated development study, or if they describe an OMI that has been adapted, extended, or culturally validated. All included studies will undergo appraisal for risk of bias, data extraction and quality evaluation of published measurement properties.³⁰

Measurement properties

Data for nine measurement properties will be extracted from eligible studies, including content validity, structural validity, construct validity (hypothesis testing), cross-cultural validity, criterion validity, reliability, internal consistency, measurement error, and responsiveness.³⁰ This will be completed by one reviewer trained in COSMIN methods, using a standardised, piloted data extraction Microsoft Excel form recommended by COSMIN, which will be checked by a second reviewer to avoid missing or erroneous information ( Table 3). The studies within each paper will be assessed for methodological quality, using the COSMIN-informed Risk of Bias Checklist, and rated: very good, adequate, doubtful and inadequate. The measurement property results will be assessed against the COSMIN-informed criteria for good measurement properties and rated using sufficient (+), indeterminate (?), insufficient (-) or inconsistent (+/-). Predefined criteria to evaluate the quality for psychometric property against can be found in the COSMIN Manual (refer to Extended Data Table 4).³⁰ Where no information is available, this will be recorded (?).

Table 4. Summary of evidence of OMIs.

Core outcome measured	OMI	Overall Methodological quality of studies	Overall Measurement properties	Quality of OMI (GRADE)	Interpretability	Feasibility	Acceptability	Recommendation
E.g., Child, young person and/or parent/carer views	Name of OMI	A/B/C/D/NA	+/?/ -	High/Moderate/Low /Very low/	Interpretable /Not interpretable/Unclear	Feasible /Not feasible/Unclear	Acceptable /Not acceptable/Unclear	Recommend use /Recommend not to use/No Recommendations

Consistent with COSMIN-COMET recommendations, content validity will be the first measurement property to be examined, using available empirical evidence to judge comprehensibility, comprehensiveness, and relevance of an OMI. This will be assessed by two reviewers, including one reviewer with lived experience. OMIs with poor or insufficient evidence of content validity will not progress for further psychometric evaluation.²¹ Subsequent evaluations will include appraising available information on structural validity and internal consistency, reliability, measurement error, construct validity, cross-cultural validity, criterion validity, and responsiveness. The overall quality of an OMI will be evaluated through discussion with the systematic review expert group, and rated using a modified Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach (high, moderate, low, very low).³⁰

Feasibility, acceptability and interpretability of an OMI will also be considered in line with real-world application (refer to Extended Data Table 5a-c).²² This considers practical aspects of administering an OMI, how acceptable it is for respondents to complete and how meaningful the scores are. Information will be gathered from multiple sources, including the OMI manual, primary development studies, or a review from appropriate respondents (clinical or people with lived experience). Where no information is available, this will be recorded.³⁰

Step 4: Generic recommendations on the selection of OMIs for a COS

Findings from Step 3 will be presented in a summary table of evidence for each OMI within each of the three core outcomes of interest ( Table 4). Information will summarise:

• Overall methodological quality of studies
• Overall quality of measurement properties
• Overall quality of OMI using GRADE
• Findings for feasibility, acceptability and interpretability

This will be shared with the systematic review expert group for discussion. Each OMI will be considered for recommendation for one or more of the core outcomes, including recommendation for use, recommendation against its use, or no recommendation, to inform the final COMS.

Dissemination and implementation

Dissemination and implementation are essential to promoting consistent uptake of the COMS in research and routine community clinical care. A targeted and multi-faceted dissemination strategy will be developed in partnership with the systematic review expert group, tailored to needs of families, clinicians and researchers and journal editors. For each core outcome, we will present its definition and recommend OMI(s), accompanied by methodological guidance to support implementation and use in in both research and practice. Our dissemination strategy includes a peer-reviewed publication, presentations at international conference such as International Clinical Trials Methodology Conference, clinician- and researcher-focused workshops, webinars, and tailored communication materials co-developed with the systematic review expert group. We will further disseminate findings through established research networks, special interest groups, charitable organisations specific to the population and health condition, and journals with a focus on the scope of this COMS. Future steps include the evaluation of the COMS uptake in clinical research.

Summary

This protocol describes a systematic review to identify, evaluate and, where possible, recommend OMIs for measuring three core chest health outcomes in children and young people with CP in the community setting: (1) child, young person and/or parent/carer views, (2) chest infection(s), and (3) swallow safety.²³ A strength of this protocol is the inclusion of a systematic review expert group comprising researchers, clinicians and people with lived experience. Their perspectives will inform each stage of the review, balancing methodological rigour with the real-world considerations to ensure that the findings are relevant to children and young people with CP. Where possible, the group will identify OMIs that can be used consistently across research and routine clinical care in this field. This may improve the quality and comparability of reported outcomes, facilitate aggregation of findings, and enable clearer interpretation of treatment effectiveness, strengthening the cumulative value of research to inform best-practice guidance.²¹

AI Statement

Microsoft Word (version 2512) Editor tool was used by the lead author (RKL) to assist with spelling, grammar, and clarity during the preparation of this manuscript.

Ethics and sharing the findings

Ethical approval is not needed because this review uses information that has already been published. Findings will be reported using recognised guidance for systematic reviews and published in an open access journal. A plain English summary will also be shared with children, young people, families and professionals.

Lived experience research partner group

• De Mano, Teresa (Public) Lived Experience Research Partners Group, Portugal.
• Bell, Kayleigh (Public), Lived Experience Research Partners Group, UK.
• Giles, Nathan (Public), Lived Experience Research Partners Group, UK.
• Malyon, Hugh (Public), Lived Experience Research Partners Group, UK.
• McGoldrick Kolawole, Sarah (Public), Lived Experience Research Partners Group, UK.
• Melluish, Julia (Public), Lived Experience Research Partners Group, UK.
• Walker, Alice (Public), Lived Experience Research Partners Group, UK.
• Uddin, Gemma (Public), Lived Experience Research Partners Group, UK.
• Day, Marie (Public), Lived Experience Research Partners Group, UK.

Data availability statement

Underlying data

No data are associated with this article.

Reporting guidelines

Reporting guidelines are available at: The PRISMA-P checklist is available from the Open Science Framework: https://doi.org/10.17605/OSF.IO/TZMEJ.³³

Extended data

Extended Data is available from the Open Science Framework: https://doi.org/10.17605/OSF.IO/TZMEJ.³³ This study is available under the terms of the CC-By Attribution 4.0 International (CC BY 4.0) licence.

Acknowledgements

The authors would like to acknowledge Kayleigh Bell, Teresa Mano Da Costa, Hugh Malyon, Nathan Giles, Sarah McGoldrick Kolawole, Julia Melluish, Alice Walker, Gemini Uddin and Marie Day for their contributions to this research study to date, as part of the CHESTI-study Lived experience research partner group. We would also like to acknowledge members of the CHESTI-study steering group: Dr. Morag Andrews, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle-upon-Tyne, UK; Dr. Sarah Crombie, Sussex Community NHS Foundation Trust, Brighton, UK; Ms. Laura Lowndes, Cambridge University Hospitals NHS Foundation Trust, UK; Prof. Paul McNamara, University of Liverpool, Liverpool, UK; Ms. Madeline Pilsbury, Stockport NHS Foundation Trust, Stockport, UK; Dr. Rachel Rapson, Child and Family Health Devon, Devon, UK. Collaborators declare no potential conflicts of interest in this project.

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