We recently talked to Professor Belinda Gabbe, an international expert in patient-reported outcomes (PROs), about the importance of PROs and their impact.
Belinda is the Head of the Prehospital, Emergency and Trauma Research Unit in the School of Public Health and Preventive Medicine at Monash University. Belinda heads up the Victorian State Trauma Registry, the Victorian Orthopaedic Trauma Outcomes Registry and the Burns Registry of Australia and New Zealand. The Victorian State Trauma Registry is funded by the Victorian Government through a contract managed by VAHI.
Patient-reported outcomes are information collected from patients on their health and quality of life. They can help to monitor patient progress, facilitate communication between professionals and patients and/or help to improve the quality of health services. PROs data can be used to identify how healthcare interventions and treatments may impact patient outcomes. They form part of a more patient-centred approach to understanding the appropriateness and effectiveness of care.
Belinda and her team have pioneered the collection of PROs from trauma patients, collecting them at 6, 12 and 24 months. The collection has evolved to use measures that look beyond the basic activities of daily living. This includes measures around pain, work and work-related disability, health-related quality of life and more extensive functional outcome measures. They also look at how patients are getting around the community, their relationships, sleep and return to the leisure and social activities they had been involved in before their injury.
Data into insights: Understanding the long-term burden of trauma
Thanks to PROs data, we now know that there is often a significant, long-term burden that comes with trauma. When this isn’t understood or is underestimated, cost-effective interventions that reduce the long-term burden may be undervalued.
Belinda’s team is currently undertaking a study of patient-reported outcomes in relation to the cost of management after an injury. Using PROs data, they have shown that patients who have early surgical amputation as opposed to patients who salvage a limb have better quality of life with less pain, less anxiety and depression, and fewer problems overall. ‘We’re seeing a clear separation in the patient-reported outcomes between these groups, which we didn’t expect in such a small patient population,’ she says.
Through linked data with the Transport Accident Commission (TAC), they have also been able to show that costs relating to early-amputation are not significantly higher when compared to the costs of treating patients where the limb has been retained. The differences in cost are related to readmissions for complications and further surgeries required for patients with salvaged-limbs.
Presenting PROs data back to clinicians
Many see reporting patients’ outcomes back to clinicians as the next step in the use of PROs data.
In the UK, PROs data has been used to compare complex fracture patients who had non-surgical management and physio, with patients that had surgery to fix the fracture. Looking at outcomes from 12 months after injury, the patients who did not have surgery are doing the same or better than the patients who had surgery.
Presenting these types of findings back to surgeons has the potential to change the way they think about their patients. It is only happening on a small scale at the moment, but Belinda suggests that reporting PROs data back to clinicians needs to become more systematic. ‘Getting more understanding of who their patients are and where they are going really takes the surgeons to a more holistic way of thinking about treatment,’ she says.
A shift in thinking to challenge assumptions
Belinda says there has been a huge change in the approach to trauma, which has brought patient-reported outcomes right to the forefront. ‘It’s not about survival anymore; it’s about the quality of that survival. There’s been a real shift in what people consider important,’ she explains.
In talking about the impact of PROs collections, Belinda stressed how they have challenged long-held beliefs to be more evidence based.
‘Every assumption that we’ve ever tested about patient reported outcomes in trauma has been found wanting: “They improve after 6 or 12 months.” “It’s a temporary disease.” “If you break a bone, you’ll always be fine.” We’ve tested every single one of them and found all of them to be false. And you can’t ignore the findings. There is an imperative to act to improve the care and outcomes for people experiencing traumatic injury.’ she says.
VAHI’s role in PROs
Belinda suggests that VAHI has a role to continue to challenge registries to use their PROs data more effectively. She sees VAHI as a facilitator that can help registries with dissemination of the information so that it is meaningful for CEOs and health services.
‘VAHI has the capacity to really help us move towards the holy grail of having patient-reported outcomes as part of routine data collection and clinical practice. I think that would be amazing,’ she says.
If you would like additional information please contact Paulette Kelly Manager, Clinical Registries, Network Support & Analytics, via firstname.lastname@example.org.