Via a partnership between VAHI and the Burns Registry of Australia and New Zealand, a pilot is underway to collect and share long-term outcomes data in the Victorian burns population.
Why do we need to collect outcomes data after a burn injury?
Burn injuries are a serious, unique, and complex trauma. More than 9,000 Australians and New Zealanders are admitted to hospital for a burn injury each year. Around one in three burn injuries are serious enough to require treatment at a hospital with a specialist burn service. Significant improvements in burn care mean that fewer patients are dying as a result of their injuries. During the 2019/20 financial year, only 1% of patients admitted to a specialist burn service in Australia and New Zealand died in hospital due to their injuries.
Reductions in burn-related fatalities is a fantastic outcome, but it is not the whole story. The burn care field has undergone a shift in mindset. Clinicians now have a greater focus on how they can ensure their patients have a good quality of life after their injury, rather than just keeping them alive.
The Burns Registry of Australia and New Zealand (BRANZ) collects data on patients admitted to the specialist burn services across Australia and New Zealand. While the BRANZ is an excellent platform for looking at what happens to patients while they are in hospital, it currently does not have the capacity to answer questions about long-term recovery and outcomes once patients leave hospital.
What challenges have been faced so far?
This is not the first time the BRANZ has piloted long-term outcome data collection. A previous attempt was made not long after the registry launched in 2009. In this pilot, individual burn services were responsible for coordinating follow-ups for their own patients. This model encountered low participation and follow-up rates, meaning that alternative data collection models needed to be considered.
Centralising the collection of outcome data through one location has been successful for other registries such as the Victorian State Trauma Registry. We wanted to see if a centralised model would have similar success in a burn patient cohort. For the most part the implementation of a centralised model has run smoothly. The major delays we have encountered have been largely administrative, to ensure we meet important ethics and governance requirements associated with the addition of these important measures to the BRANZ.
What data are being collected and how will they be used?
As part of the pilot project, patients treated at the Burns Service at the Royal Children's Hospital and at the Victorian Adult Burns Service at the Alfred are being interviewed to understand how well they have recovered from their injury. Follow-up interviews are taking place at three, six and 12 months after their injury.
During the follow-up interviews, patients are being asked about aspects of their recovery that are unique and important to their injury, such as heat specificity, interpersonal relationships, body image, itch, and pain. We are also collecting general information about their mood and mobility. The list of questions we ask patients about their recovery may expand over time to cover topics such as sleep, and if and how they have been able to return to leisure and social activities they were involved in prior their injury.
If the pilot program in Victorian burns patients is successful, the program will look to expand to include patients in other states and territories, and potentially even New Zealand. The successful implementation of long-term outcomes collection will improve the capacity to quantify the burden of burn injuries, evaluate quality of care, drive further improvements in burn care, and prioritise topics for research within and across Australia and New Zealand. The ultimate aim is better outcomes for patients.
How is the pilot progressing in Victoria?
Recruitment of patients from The Alfred has already started, and we recently surpassed having 50 patients complete their 3-month follow-up interview. As of July 2021, we have just finalised a research agreement with the Royal Children’s Hospital and will begin recruitment of paediatric patients in the coming weeks. We look forward to providing further updates as this important collaboration continues.
For more information on VAHI’s Patient Reported Outcomes program, contact Louise Kelly via email@example.com.