Abstract
A proxy-assessment of health-related quality of life (HRQL) may be an alternative for burn patients who are medically unable to self-report shortly after being admitted to the hospital. This study examined the patient–partner agreement on the recalled pre-injury HRQL of burn patients. In a multi-centre study of 117 patient–partner pairs, the recalled pre-burn HRQL was assessed with the EQ-5D-3L + Cognition during the acute phase following the burns. Agreement was evaluated with Kappa and ICC statistics. Burn severity and PTSD symptoms were assessed as potential predictors of disagreement. The results showed that pre-burn EQ-Index scores were similar to population norms, whereas the EQ Visual Analog Scale (EQ-VAS) scores of patients were significantly higher. Agreement varied across EQ-5D domains and, after adjusting for prevalence, was substantial to almost perfect. Average agreement on the EQ-Index and EQ-VAS was, respectively, substantial and moderate, but differences between partners were larger at lower levels of HRQL, and specifically in the pain/discomfort domain. Patient–partner differences could not be explained by the patient’s age or gender, number of surgeries, partner’s presence at the burn event, or post-traumatic stress disorder (PTSD) symptoms of either the patient or partner. In conclusion, patient–partner agreement is substantial and partner–proxy reports of pre-burn EQ-5D domains and EQ-Index scores may be used to complement or serve as a substitute for the patient’s assessment. Given the moderate agreement on the EQ-VAS, it may be less suited for proxy assessment.
Highlights
A severe burn injury can vastly impact the patient’s physical, psychological, and social well-being
A growing number of studies have assessed pre-burn health-related quality of life (HRQL) [3,4], which may serve as a reliable benchmark for patient recovery of HRQL and may aid prognosis and treatment choices [5]
The data in this study were collected as part of a larger project concerning the social impact of burns
Summary
A severe burn injury can vastly impact the patient’s physical, psychological, and social well-being. Reduced levels of health-related quality of life (HRQL) [1] are common within the first year post-burn [2]. A growing number of studies have assessed pre-burn HRQL [3,4], which may serve as a reliable benchmark for patient recovery of HRQL and may aid prognosis and treatment choices [5]. Since sustaining burns is an unexpected event, pre-burn functioning is preferably assessed retrospectively and within the first weeks after the injury [6,7]. To estimate pre-burn health status more accurately, partner–proxy assessment may complement the patient’s self-reporting, since partners are well aware of the patient’s pre-burn functioning. The partner’s proxy assessment may serve as a substitute for the patient’s assessment if medical status prevents timely self-report by the patient. Data collection by proxy may avoid systematic non-participation and reduce missing data [7,9]
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