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

Formisano R, Longo E, Azicnuda E, Silvestro D, D'Ippolito M, Truelle J, Von Steinbuchel N, Von Wild K, Wilson JTL, 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), pp. 279-286.

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.

Caregiver; Health-related quality of life; Self-awareness; Traumatic brain injury

Neurological Sciences: Volume 38, Issue 2

Author(s)Formisano, Rita; Longo, Eloise; Azicnuda, Eva; Silvestro, Daniela; D'Ippolito, Mariagrazia; Truelle, Jean-Luc; Von Steinbuchel, Nicole; Von Wild, Klaus; Wilson, J T Lindsay; Rigon, Jessica; Barba, Carmen; Forcina, Antonio; Giustini, Marco
Publication date28/02/2017
Publication date online08/11/2016
Date accepted by journal27/10/2016
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