Quality of life after brain injury (QOLIBRI): Italian validation of the proxy version

Abstract

To validate the proxy version of the Quality of Life after Brain Injury (QOLIBRI) questionnaire to utilize caregivers for comparison and to evaluate the correspondence between patients' self-perceived and caregivers' perception of patients' Health-Related Quality of Life (HRQoL). Ninety-two patients with severe TBI and their main caregivers were enrolled. Patients' and caregivers' HRQoL was assessed by the Patient-QOLIBRI (Pt-QOLIBRI) and the Proxy-QOLIBRI (Pro-QOLIBRI), respectively. The Pro-QOLIBRI is a modified version of the QOLIBRI to investigate caregivers' perception of patients' HRQoL (Pro-QOLIBRIpatient-centered), and their degree of satisfaction and botheredness (Pro-QOLIBRIcaregiver centered). The patients' disability and their social reintegration was investigated by means of Glasgow Outcome Scale Extended and Community Integration Questionnaire. Pro-QOLIBRI has good internal consistency and homogeneity. There was also positive correlation between the level of satisfaction measured by Pro-QOLIBRI but not by Pt-QOLIBRI, and the disability severity and social integration of the patients. The comparison between the Pt-QOLIBRI and Pro-QOLIBRI confirmed the usefulness of the Pro-QOLIBRI, especially the caregiver-centered version, to predict the social reintegration of survivors. To our knowledge this is the first study that correlates the HRQoL of survivors, as self-perceived and as perceived by the caregivers with social reintegration.

Keywords: Caregiver; Disability severity; Health-related quality of life; Social reintegration; Traumatic brain injury.