The CaPTuRE Study
(Cerebral Palsy - Translating Research on Early identification)
The ‘CaPTuRE’ study is looking at the family experience of receiving a diagnosis of cerebral palsy (CP) in NZ and the tools Health Professionals are using to assist with diagnosing CP in NZ.
We are inviting people with cerebral palsy, parents and health professionals to complete a short survey to help understand the CP diagnosis experience in NZ.
Background:
The CaPTuRE research project will use a combined approach of a nationwide clinician and family survey and clinical case notes review of the patient journey for children on the New Zealand Cerebral Palsy Register (NZCPR). The project will compare our current clinical practice and experience with international evidence for best practice, acknowledging areas of disparity and ethnic and regional diversity.
Our team will support knowledge translation to build confidence and capacity of our clinician workforce, with an overarching goal to lower the age of diagnosis of CP in NZ, improve early management pathways, and address any regional or ethnicity inequity in health service delivery. Better outcomes for children with CP start with earlier diagnosis / detection of high risk of CP to allow for earlier delivery of targeted interventions and preventative management such as hip surveillance.
Outcomes from the Capture Survey's can be found below:
Williams SA, Alzaher W, Mackey A, Hogan A, Battin M, Sorhage A, Stott NS. “It Should Have Been Given Sooner, and We Should Not Have to Fight for It”: A Mixed-Methods Study of the Experience of Diagnosis and Early Management of Cerebral Palsy. Journal of Clinical Medicine. 2021; 10(7):1398. https://doi.org/10.3390/jcm10071398
Williams, S.A., Mackey, A., Sorhage, A., Battin, M., Wilson, N., Spittle, A. and Stott, N.S. (2021). Clinical practice of health professionals working in early detection for infants with or at risk of cerebral palsy across New Zealand. J Paediatr Child Health, 57: 541-547. https://doi.org/10.1111/jpc.15263
Results from the NZCPR review:
Results from four co-design workshops:
Results from the clinician and family surveys:
Check out the new resources on CP Classifications here.
Follow up information from the CP Education Day July 9th 2021
View PDF of the CP Education Day Post Event Info by clicking image below.
Hammersmith Infant Neurological Training (HINE) Training, NZ
If your work place is interested in HINE training workshop please contact Dr Sian Williams or Dr Anna Mackey for further information sian.williams@auckland.ac.nz; amackey@adhb.govt.nz
HINE website http://hammersmith-neuro-exam.com/
General Movement Assessment network, NZ
Are you using the General Movements Assessment in your practice? Join us on the NZ General Movements email network - Contact: Dr Sian Williams: sian.williams@auckland.ac.nz
Contact details
For more information on the ‘CaPTuRE’ project:
Email: Dr Sian Williams sian.williams@auckland.ac.nz or Dr Anna Mackey amackey@adhb.govt.nz
