Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers

Rita Formisano, Eloise Longo, Eva Azicnuda, Daniela Silvestro, Mariagrazia D'Ippolito, Jean-Luc Truelle, Nicole von Steinbüchel, Klaus von Wild, Lindsay Wilson, Jessica Rigon, Carmen Barba, Antonio Forcina, Marco Giustini

Research output: Contribution to journalArticle


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' judgment 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.

Original languageEnglish
Pages (from-to)279-286
Number of pages8
JournalNeurological Sciences
Issue number2
Publication statusPublished - Feb 2017



  • Adolescent
  • Adult
  • Aged
  • Awareness
  • Brain Injuries, Traumatic/psychology
  • Caregivers/psychology
  • Female
  • Humans
  • Male
  • Middle Aged
  • Quality of Life/psychology
  • Self Concept
  • Young Adult

Cite this

Formisano, R., Longo, E., Azicnuda, E., Silvestro, D., D'Ippolito, M., Truelle, J-L., von Steinbüchel, N., von Wild, K., Wilson, L., Rigon, J., Barba, C., Forcina, A., & Giustini, M. (2017). Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers. Neurological Sciences, 38(2), 279-286. https://doi.org/10.1007/s10072-016-2755-y