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
Chesti Study logo with light background
 
 
 
 

Study information

What is the problem?

Children and young people with cerebral palsy often face chest health problems such as noisy breathing, a rattly chest, a weak cough, or difficulty clearing phlegm. This can lead to recurrent chest infections and is the most common reason to seek:
  • GP advice
  • Antibiotic treatment
  • Emergency hospital care
Poor chest health affects the quality of life for both the child and their family. It is also the main cause of early death in children with cerebral palsy.

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.
Two children with cerebral palsy, participants of the Chesti study

Why is this study needed?

Measuring chest health can help us detect changes early, make quick treatment decisions, and decide which approaches work best. Yet…
The best way to assess chest health in cerebral palsy is unclear. Typical measures such as breathing out quickly through a tube, do not work for many children and young people with cerebral palsy. As a result, chest health is often poorly monitored in this population.
The best approach to managing chest health in cerebral palsy is also unclear. Researchers have used different measures across different studies, making it difficult to compare or combine 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.

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. 
If you would like to get involved, please contact Rachel.knightlozano@plymouth.ac.uk.

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. 

Public contributors

Representatives of the patient, carer & public involvement (PCPI) advisory panel 
  • Mrs Julia Melluish
  • Mr Mark Williams
  • Mr Hugh Malyon
  • Mrs Kaleigh Bell