Assessing generic health-related quality of life in patients with burn injuries is increasingly common, yet previous studies have focused on specific timepoints in isolation rather than looking at the recovery trajectory for patients over time. This study aimed to: (i) describe the health status of burn patients over a one-year follow-up period, (ii) identify factors associated with recovery trajectories, and (iii) establish whether health-related recovery trajectories differ by key patient and injury characteristics. We followed 441 patients who sustained a burn injury between January and December 2021. Follow-up data were obtained through telephone interview and/or online self-completion at three, six, and 12 months postinjury. The 5-Level EuroQoL 5 Dimensions Questionnaire (EQ-5D-5L) was collected as a measure of health-related quality of life, and multinomial logistic regression modelling was used to identify characteristics associated with recovery trajectories in each of the EQ-5D-5L dimensions. Three hundred and forty-four patients (88 %) completed at least two follow-ups. The proportion of patients reporting no problems in each of the EQ-5D-5L items increased over time, and the majority of patients presented as "problem-free" (ranging from 43.9 % for the pain or discomfort item to 77.0 % for the usual care item). Having a deep dermal or full-thickness burn or a pre-existing mental health, alcohol, or other drug condition were most commonly associated with a patient belonging to a sub-optimal recovery trajectory. For example, this study confirmed patients with deep dermal or full-thickness burns had a greater risk of having persistent problems compared to patients with superficial or mid-dermal burns for each EQ-5D-5L domain: mobility (adjusted relative risk ratio [95 % confidence interval] 4.91 [2.16-11.15]), self-care (4.14 [1.40-12.27]), usual activities (4.76 [2.04-11.07]), pain or discomfort (3.75 [1.87-7.52]), and anxiety or depression (2.76 [1.34-5.69]). The current findings highlight that regardless of burn severity, survivors can still experience challenges with their recovery throughout the first 12 months following injury. These findings may help healthcare practitioners identify patients at risk of poorer outcomes, allowing for personalised recovery and rehabilitation plans to be designed and implemented to optimise care and return to function.

Collecting patient-reported outcome measures (PROMs) has been a longstanding priority for the Burns Registry of Australia and New Zealand (BRANZ). An earlier pilot of hospital-led PROM collection encountered low participation rates and high loss to follow-up, indicating consideration for an alternative model was warranted. To establish the feasibility of implementing centralised long-term PROM collection within the BRANZ. Two burn services participated in this prospective, longitudinal pilot. PROMs were collected from patients admitted to the services between January and December 2021 who survived to discharge. Follow-up occurred via telephone or online self-completion at three, six, and 12 months post-injury using burn-specific and generic health-related quality-of-life measures. There were 450 patients (423 adult patients [≥ 16 years] and 27 paediatric patients [< 16 years]) who could be contacted and agreed to participate in the follow-ups. Most patients initially opted for telephone rather than online self-completion (n = 305, 67.5 %). No key sociodemographic or injury event factors were associated with specifically opting for online self-completion. The follow-up rates were 81.1 % at three months, 81.9 % at six months, and 77.3 % at 12 months. Data missingness was low (i.e., < 2 %) for all instrument items, excluding the visual analogue scale scores of the 5-Level EuroQoL 5 Dimensions Questionnaire and the two paediatric burn-specific measures. Collecting PROMs from burns patients in the first 12 months after injury via a centralised approach was shown to be feasible, with higher participation rates and low missingness.

Burn survivors can experience social participation challenges throughout their recovery. The aim of this study was to develop a novel Australian English translation of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, the Aus-LIBRE Profile. This study consisted of 3 stages: (1) translation of the LIBRE Profile from American to Australian English by Australian researchers/burns clinicians, (2) piloting and cognitive evaluation of the Aus-LIBRE Profile with burn survivors to assess the clarity and consistency of the interpretation of each individual item, and (3) review of the Aus-LIBRE Profile by colleagues who identify as Aboriginal Australians for cross-cultural validation. In stage 2, investigators administered the translated questionnaire to 20 Australian patients with burn injuries in the outpatient clinic (10 patients from Victoria and 10 patients from Western Australia). Face validity of the Aus-LIBRE Profile was tested in 20 burns survivors (11 females) ranging from 21 to 74 years (median age 43 years). The total body surface area burned ranged from 1% to 50% (median 10%). Twelve language changes were made based on the feedback from the burn clinicians/researchers, study participants, and colleagues who identify as Aboriginal Australians. Using a formal translation process, the Aus-LIBRE Profile was adapted for use in the Australian burn population. The Aus-LIBRE Profile will require psychometric validation and testing in the Australian patient with burns population before broader application of the scale.

The aim of this study was to examine the psychometric properties of the Australian translated version of LIBRE, the Aus-LIBRE Profile. The Australian version of the Life Impact Burn Recovery Evaluation (Aus-LIBRE) Profile measures six domains of social participation. A prospective validation study was completed at two state-wide burn centers in Australia. The reliability and validity of the Aus-LIBRE Profile were evaluated by administering it in parallel with two well established generic measures (EQ-5D-5L and Veterans RAND-12 Item Health Survey [VR-12]) in adult burn survivors. Internal consistency reliability was evaluated using Cronbach's alpha statistics for all subscales. Spearman correlation coefficient was calculated for all survey scores to evaluate construct and criterion validity. To assess test-retest reliability, the Aus-LIBRE Profile was administered a second time, seven to 10 days following the initial administration. Sensitivity was evaluated using the repeatability coefficients, standard error of measurement (SEM), and minimal detectable change (MDC). Data was collected for 303 burn survivors, 58.4% were male with a median age of 44.4 years. The Factor Correlation matrix demonstrated moderate to strong relationships among the domains (r = 0.34-0.77). All correlations between the Aus-LIBRE Profile domains and the EQ-5D-5L and VR-12 were significant except the relationship between Aus-LIBRE Romantic Relationships and the VR-12 Physical Component Summary Score. The repeatability coefficients ranged from 8.43 to 12.95 and SEMs ranged from 2.81 to 3.69 for the six domains. Minimal detectable change (MDC₉₅) values ranged from 7.8 points to 10.23 points. This study confirms the validity and reliability of the Aus-LIBRE Profile as a patient-reported outcome measure that measures the social participation of burn survivors in Australia.