Feasibility of collecting long-term patient-reported outcome data in burns patients using a centralised approach

Abstract

Background: 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.

Aims: To establish the feasibility of implementing centralised long-term PROM collection within the BRANZ.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: Burns; Feasibility; Follow-up; Outcome; Quality of life; Trauma.