Implementing the Australian Paediatric Rehabilitation Outcomes Registry
Children's Health Queensland Hospital and Health Service
Duration: January 2016 – December 2017
Paediatric rehabilitation aims to maximise the ability of the child to participate in activities at home, school and the community. Rehabilitation focuses on maximal restoration of function regardless of age but there are substantial differences between children and adults in the types of impairments of concern, development and maturation and, importantly, decision making abilities. Thus families and caregivers play a key role in paediatric rehabilitation.
While the AROC adult rehabilitation benchmarking initiative commenced in 2002 is well established, with close to 100% participation of all inpatient rehabilitation facilities in Australia and New Zealand, a paediatric equivalent was not available.
What we did
The Paediatric Rehabilitation Data Set Working Group (a combined AROC and Australasian Rehabilitation Faculty of Rehabilitation Medicine group) first met in Christchurch in March 2010. Subsequent work included development of paediatric specific impairment codes and a draft dataset. In 2016 the Queensland Paediatric Rehabilitation Service (QPRS) at Lady Cilento Children’s Hospital was successful in obtaining funding to allow AROC in association with QPRS and continuing collaboration with senior clinicians from the specialist paediatric rehabilitation units in Australia and New Zealand, to undertake the development of a paediatric rehabilitation outcomes benchmarking initiative.
The project achievements include:
- Finalisation of an agreed national outcome dataset and data points for inpatients and day hospital paediatric rehabilitation services; the major outcome measure in the dataset is the weeFIM
- Extension of the current AROC database to include inpatient and day hospital paediatric rehabilitation outcome measures
- Development and implementation of systems (including training) to collect data in line with the agreed national dataset for specialist paediatric rehabilitation services
- Pilot implementation of the data collection by QPRS in August 2016, following training in the dataset and data collection system
- Provision of dataset training in November and December 2016 to all paediatric rehabilitation services in Australia and NZ wishing to join the initiative
- Commencement of data submission by paediatric rehabilitation services in 2017
- Development of the inaugural paediatric rehabilitation benchmarking report.
AROC would like to acknowledge the valuable contributions of all those involved in the project and looks forward to continuing collaboration with the participating services including provision of support to review and analyse paediatric rehabilitation outcome data.
Project leaders: Jacquelin Capell and Frances Simmonds