CHESTI-study

Core outcome set and measures of cHest hEalth in children and young people with cerebral palSy in the communiTy settIng

A little boy pretending to be a doctor while examining his teddy bear with a stethoscope

Study overview

Design: A 3-phase core outcome set methodology

Study location: International

Aim: To develop and agree ways to assess chest health in children and young people with cerebral palsy

Study participants: Children and young people with cerebral palsy, parent/carers, health, social and educational professionals, academics and researchers

View the full study summary and abstract on the NIHR website

Study information

What is the problem?

Cerebral Palsy is the most common physical disability in early childhood. It affects 30,000 children in the UK. It is a life-long condition caused by damage to the brain. This affects a person’s ability to move, but also to breathe, cough and clear their lungs effectively, leading to poor chest health and recurrent illnesses.

Poor chest health causes over half of the deaths in children with cerebral palsy. It is the most common reason for GP visits and emergency hospital care. This significantly impacts on the quality of life for children and their families. One parent shared that her child “misses so much time enjoying life, playing with school friends, and doing fun activities that keep her healthy and happy” due to frequent chest infections.

Two children with cerebral palsy, participants of the Chesti study

What are we trying to do?

Our aim is to develop and agree ways to assess chest health in children and young people with cerebral palsy.

Findings will help clinicians, children and families to regularly monitor and evaluate changes in chest health. This will prompt timely treatment decisions and support proactive clinical care.

Longer-term, findings will help researchers to test treatments in similar ways. This will help decide which treatments work better to promote chest health and prevent related illnesses such as pneumonia.

Why is this study needed?

The best way to assess chest health in cerebral palsy is unclear. Common measures such as ‘how fast you can blow air into a tube’ are often not possible for children with cerebral palsy, who struggle to control their breathing muscles or to follow instructions. As a result, chest health is often poorly monitored in this population.

Similarly, the best approach to managing chest health in cerebral palsy remains unclear. Researchers have used various methods to measure chest health, making it difficult to compare or combine study results. As a result, clinicians must make treatment decisions without knowing which options are most effective.

To improve research and clinical care for children and young people with cerebral palsy, we need a standardised set of important measures for chest health. To ensure the greatest benefit, these measures should reflect the needs and views of children, young people, and their families, particularly those at higher risk of poor chest health. This includes families from ethnic minorities, low-income households, and children who are unable to walk or have multiple needs.

Research plan

Part 1

We will begin by asking parents, young people with cerebral palsy, and professionals what they believe is important to measure in chest health. These are called ‘outcomes’ (e.g. school attendance). We will combine their feedback with existing research on outcomes to create a comprehensive list, which will be used in Part 2.

Part 2

This list of outcomes will be sent to a larger group of parents, young people with cerebral palsy, and professionals globally, through an online survey. Participants will be asked to rate the importance of each outcome. The highest-scoring items will be recommended as ‘core outcomes’.

Part 3

We will then identify ways to measure these ‘core outcomes’ (e.g. days missed at school). Their strengths and weaknesses will be assessed. Findings will be presented to parents, young people with cerebral palsy, and clinicians. They will finalise a list of recommended ways to measure chest health in clinical practice and research.

Patient and Public Involvement

The studies will be developed with a diverse group of parent/carers and with young people with cerebral palsy. Many have already joined the CHESTI-Study public advisory group and helped design this proposal. This advisory group will be involved all aspects of the research plan. This includes recruitment, survey design, and the creation of two short, animated videos to help study participation and share findings.

Sharing Findings

Findings will be shared through infographics, written publications, and an animated video that uses lay language and translated subtitles. These will feature on this website, social media and presented at conferences.

Our team

Research team

Mrs Rachel Knight Lozano (Awards Holder), Doctoral Clinical and Practitioner Academic Fellow, National Institute of Health Research; Lecturer in Rehabilitation (Postgraduate Studies) University of Plymouth; Paediatric Physiotherapist, Child and Family Health Devon.
Professor Jos Latour (Director of Studies), Professor of Nursing, University of Plymouth
Dr Harriet Shannon, Associate Professor of Physiotherapy, UCL Great Ormond Street Institute of Child Health
Professor Chris Morris, Professor of Child Health Research, University of Exeter
Mrs Rachel Rapson, Consultant Physiotherapist and Associate Clinical Director for Allied Health Professions, Child and Family Health Devon
Ms Christa Ronan, Highly Specialist Paediatric Respiratory Outreach Physiotherapist, Bristol Royal Hospital for Children

Research collaborating partners

Professor Paul McNamara, Professor in Child Health (University of Liverpool) and chief investigator of the Parrot Trial
Dr. Sarah Crombie, clinical specialist physiotherapist, scientific member of the BACD Strategic Research group, and chief investigator of the Breathe Easy Trial
Dr. Noula Gibson, clinical academic physiotherapist and research trial coordinator in Australia
Dr Nicola Harman, Senior Lecturer in Trials Methodology and member of the COMET Initiative, University of Liverpool
Madeline Pilsbury, Chair of the Consensus to Action UK network and Madeline Pilsbury and expert clinician in the management of respiratory health.
Mrs. Laura Lowndes, Respiratory Committee Chair of the Association of Paediatric Chartered Physiotherapists, and expert clinician in the management of respiratory health.