ORIGINAL ARTICLE Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers Rita Formisano 1 • Eloise Longo 2 • Eva Azicnuda 1 • Daniela Silvestro 1,3 • Mariagrazia D’Ippolito 1,3 • Jean-Luc Truelle 4 • Nicole von Steinbu ¨chel 5 • Klaus von Wild 6 • Lindsay Wilson 7 • Jessica Rigon 8 • Carmen Barba 9 • Antonio Forcina 10 • Marco Giustini 2 Received: 25 July 2016 / Accepted: 27 October 2016 / Published online: 8 November 2016 Ó Springer-Verlag Italia 2016 Abstract The primary aim of the study was to adopt QOLIBRI (quality of life after brain injury) questionnaire in a proxy version (Q-Pro), i.e., to use caregivers for comparison and to evaluate whether TBI patients’ judg- ment corresponds to that of their caregivers since the possible self-awareness deficit of the persons with TBI. A preliminary sample of 19 outpatients with TBI and their proxies was first evaluated with the Patient Competency Rating Scale to assess patients’ self-awareness; then they were evaluated with the QOLIBRI Patient version (Q-Pt) and a patient-centered version of the Q-Pro. Subsequently, 55 patients and their caregivers were evaluated using the patient-centered and the caregiver-centered Q-Pro versions. Q-Pt for assessing Quality of Life (QoL) after TBI, as patients’ subjective perspective and Q-Pro to assess the QoL of patients as perceived by the caregivers. The majority of patients (62.2%) showed better self-perception of QoL than their proxies; however, patients with low self- awareness were less satisfied than patients with adequate self-awareness. Low self-awareness does not impair the ability of patients with TBI to report on satisfaction with QoL as self-perceived. Keywords Caregiver Á Health-related quality of life Á Self- awareness Á Traumatic brain injury Introduction Most studies on traumatic brain injury (TBI) report out- come data in terms of dependence in the activities of daily living and underestimate social isolation and health-related quality of life (HRQoL), whereas in the last decade, out- come studies on TBI have been particularly concerned with the quality of social reintegration and participation. QOLIBRI (quality of life after brain injury) is a recog- nized international instrument that was developed to assess HRQoL after TBI. HRQoL in the field of TBI is a con- struct, which encompasses patients’ subjective perspective of health and well-being. In the area of HRQoL, the Electronic supplementary material The online version of this article (doi:10.1007/s10072-016-2755-y) contains supplementary material, which is available to authorized users. & Marco Giustini marco.giustini@iss.it 1 IRCCS, Rehabilitation Hospital Santa Lucia Foundation, Rome, Italy 2 National Institute of Health, Viale Regina Elena 299, 00161 Rome, Italy 3 Department of Psychology, Sapienza University of Rome, Rome, Italy 4 Service de Medicine Physique et Re ´adaption, C.H.U. Raymonde-Poincare ´, Garches, France 5 Department of Medical Psychology and Medical Sociology, Georg-August-University, Goettingen, Germany 6 Psychology, Department of Neurosurgery and Early Neurotraumatological Rehabilitation, Clemens Hospital, Westfalian Wilhelms University of Mu ¨nster, Mu ¨nster, Germany 7 Department of Psychology, University of Stirling, Stirling, UK 8 IRCCS San Camillo Hospital Foundation, Venezia-Lido, Italy 9 Pediatric Neurology Unit, A. Meyer Children’s Hospital, University of Florence, Florence, Italy 10 Department of Engineering, University of Naples, Parthenope, Naples, Italy 123 Neurol Sci (2017) 38:279–286 DOI 10.1007/s10072-016-2755-y