Individual recovery of health-related quality of life during 18 months post-burn using a retrospective pre-burn measurement: an exploratory study

PURPOSE: This study explored the individual trajectories of health-related quality of life (HRQL) compared to recalled pre-burn level of HRQL and investigated whether burn severity and post-traumatic stress disorder (PTSD) symptoms increase the risk of not returning to pre-burn level of HRQL. METHODS: Data were obtained from 309 adult patients with burns in a multicenter study. Patients completed the EQ-5D-3L questionnaire with a Cognition bolt-on shortly after hospital admission, which included a recalled pre-injury measure, and, again, at 3, 6, 12 and 18 months post-burn. Burn severity was indicated by the number of surgeries, and PTSD symptoms were assessed with the IES-R at three months post-burn. Pre- and post-injury HRQL were compared to norm populations. RESULTS: Recalled pre-injury HRQL was higher than population norms and HRQL at 18 months post-burn was comparable to population norms. Compared to the pre-injury level of functioning, four HRQL patterns of change over time were established: Stable, Recovery, Deterioration, and Growth. In each HRQL domain, a subset of patients did not return to their recalled pre-injury levels, especially with regard to Pain, Anxiety/Depression, and Cognition. Patients with more severe burns or PTSD symptoms were less likely to return to pre-injury level of functioning within 18 months post-burn. CONCLUSION: This study identified four patterns of individual change. Patients with more severe injuries and PTSD symptoms were more at risk of not returning to their recalled pre-injury HRQL. This study supports the face validity of using a recalled pre-burn HRQL score as a reference point to monitor HRQL after burns. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11136-020-02678-0) contains supplementary material, which is available to authorized users.