Centralised Collection of Patient-Reported Outcome Measures in the Victorian Burns Population

Lincoln Tracy¹, Healther Cleland², Warwick Teague³, Belinda Gabbe^1,4,
¹Monash University, Melbourne, Victoria, Australia
²The Alfred, Melbourne, Victoria, Australia
³The Royal Children’s Hospital, Melbourne, Victoria, Australia
⁴Swansea University, Swansea United Kingdom

Abstract

Background: While the Burns Registry of Australia and New Zealand (BRANZ) is a leading international clinical quality registry, it lacks long-term outcome monitoring for patients following hospital discharge. A previous pilot of long-term outcomes in the BRANZ encountered low participation rates and high loss to follow up. This pilot study aimed to determine the feasibility of implementing centralised long-term collection of patient-reported outcome measures as a routine component for the two Victorian burn services that contribute to the BRANZ.

Methods: Patients who were admitted to the Victorian Adult Burn Service and the Burns Service at the Royal Children’s Hospital and survived to discharge in 2021 were considered. Patients (or a proxy) were given the opportunity to complete follow-ups at three-, six-, and 12-months post-injury via telephone interview or online self-completion. Both paediatric and adult patients completed questionnaires relating to burn-specific and general health-related quality of life.

Results: Four hundred and eighty-four patients were approached and 450 (423 adult and 27 paediatric patients) consented to follow-up. Most patients preferred phone (74%) rather than online (26%) follow-ups. Completion rates were high at all time points: 81% at three-months, 82% at six-months, and 76% at 12-months. Ninety-seven percent of patients completed at least one follow-up, while 60% completed all three follow-ups. Data completeness was high at all timepoints.

Conclusions: Telephone follow-up is resource intensive, but results in higher follow up rates than online self-completion. These results encourage us to examine options for sustainable incorporation of long-term follow-up data into routine registry data collection.

Biography

Dr Lincoln Tracy is a Research Fellow within the School of Public Health and Preventive Medicine, Monash University. He undertakes research identifying objective and verifiable data on treatment, outcomes, and quality of care to encourage higher standards of burn injury prevention and care.