# Core outcome set and measures of chest health in children and young people with cerebral palsy in the community setting: the CHESTI study protocol

## TL;DR

This study aims to create a standardized set of outcomes and measures to assess chest health in children with cerebral palsy, improving research and clinical care.

## Contribution

The study introduces a core outcome set and measurement instruments tailored for chest health in children with cerebral palsy.

## Key findings

- A 3-phase methodology will be used to develop the core outcome set and measurement instruments.
- Stakeholder input will guide the selection of outcomes and measures for chest health.
- The study will prioritize under-represented groups in research.

## Abstract

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.

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.

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.

COMET registration: 2590 (https://www.comet-initiative.org/Studies/Details/2590)

CRD42024562735.