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.