The ANZPIC Registry
Since 1997 ANZICS has been collecting and reporting on paediatric intensive care unit (ICU) admissions across Australia and New Zealand. This enables us to monitor the activity, quality of the care and outcomes of our ICU with those of similar ICUs across the country. Data held in the Registry can also be used for research to improve the care of critically ill children and young people. The Registry is hosted by the Australian and New Zealand Intensive Care Society (ANZICS). It is funded by Health Departments in Australia and New Zealand.
The registry collects the following information:
- The reason for the ICU admission
- Diagnosis
- Age and characteristics of the child
- Severity of illness
- Treatments
- Outcomes
Health information is recorded in the hospital health record as part of routine care by the staff looking after your child. Hospitals extract only relevant information from the health records to send to the Registry. Registry staff access the data to prepare reports for ICUs, hospitals, and health departments. Individual cases are never described in these reports. Research staff can apply to access the data for specific research projects. Projects need to be approved by a Research Ethics Committee before the data can be accessed for research. Government departments may use the data for health policy and planning purposes.
The ANZPIC Registry Patient-Reported Outcomes and Experience Survey
A number of hospitals across Australia and New Zealand will take part in the study. The SMS/email invitations will be sent using personal contact information of the parents/carers from the study hospital where the child is admitted. Contact information will remain secure at the health service and will not be disclosed to third parties.
Parents and carers of children admitted to Intensive Care are invited to complete a Health Outcome and ICU Experience Survey, soon after the child is discharged from the ICU. The first Health Outcome survey asks questions about your child’s baseline health status one month before the ICU admission. The ICU Experience survey asks for feedback on your experience of the care provided by the ICU staff. Responses to this survey should be confined to the ICU only and should not include thoughts on care provided in other areas of the hospital.
The follow-up Health Outcome survey will be sent to parents and carers 6 months after your child is discharged from ICU. This survey asks about the child’s recovery and health status at this point in time.
Resources:
- Paediatric Survey Plain Language Statement
- Paediatric Survey Generic Poster
- Paediatric Survey Generic Brochure
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