Respiratory Health in Tamariki with Cerebral Palsy in NZ
Project team:
Lead Investigator: Prof N Susan Stott1, 2
Associate Professor Cass Byrnes3
Alexandra Sorhage2
Dr Anna Mackey2
Dr Jimmy Chong4
Dr Marie Blackmore5
Dr Caitlin Agnew6
Site Champions:
Dr Tim Hill, CMDHB
Dr Eoghan Rutledge, Starship Child Health, ADHB
1 Dept of Surgery, University of Auckland, Auckland, New Zealand
2 Paediatric Orthopaedics, Starship Child Health, ADHB
3 Paediatric Respiratory, Starship Child Health, ADHB
4 Paediatric Rehabilitation, Starship Child Health, ADHB
5 Telethon Kids Institute, Perth, Western Australia
6 Paediatric Dental, Starship Child Health, ADHB
Summary of Project:
The project will run from 2021 - 2023
Proudly Funded by Starship Foundation
Respiratory disease causes a significant burden for people with CP and is the main cause of premature death. Respiratory problems are very common and by the time respiratory disease becomes obvious it is often well established and irreversible.
Part 1
Part 1 of the study will investigate the current burden of respiratory disease from childhood to young adulthood (0 to 26 years of age) in NZ, through linking clinical information from over 1200 participants from the New Zealand Cerebral Palsy Register to relevant respiratory outcomes, held within the Ministry of Health datasets on hospital admissions, emergency department presentation, pharmaceutical collections, including antibiotic dispensing for respiratory disease and mortality collection. The primary outcome is to assess for the presence of any health inequities in respiratory health between Māori and non-Māori tamariki with CP. We will also determine respiratory ill health by degree of disability, age, socioeconomic status and DHB.
Part 2
Part 2 of the project will include a feasibility study to trial a clinical ‘Respiratory CP Checklist’ developed and validated in Australia as a tool to predict the risk of hospital admission for respiratory disease. This combined information will inform a future project looking at using the checklist for persons with CP to allow early detection of risk and prevention of chronic respiratory disease in our CP population and move towards a ‘surveillance’ and ‘preventative’ care whānau centred care model.
The respiratory checklist is now "live" and can be completed by caregivers, whānau and people with lived experience if the person with CP is aged between 0-26 years of age and living in the Auckland Tāmaki Makaurau region. Read the poster here if you need more information.
The checklist can be completed by clicking here or by scanning the QR code with your camera app on the phone.
Project contact: Alexandra Sorhage
Email: asorhage@adhb.govt.nz