Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers.
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.
IRCCS, Rehabilitation Hospital Santa Lucia Foundation, Rome, Italy.
Rita
R
Formisano
National Institute of Health, Viale Regina Elena 299, 00161, Rome, Italy.
Eloise
E
Longo
IRCCS, Rehabilitation Hospital Santa Lucia Foundation, Rome, Italy.
Eva
E
Azicnuda
IRCCS, Rehabilitation Hospital Santa Lucia Foundation, Rome, Italy.|Department of Psychology, Sapienza University of Rome, Rome, Italy.
Daniela
D
Silvestro
IRCCS, Rehabilitation Hospital Santa Lucia Foundation, Rome, Italy.|Department of Psychology, Sapienza University of Rome, Rome, Italy.
Mariagrazia
M
D'Ippolito
Service de Medicine Physique et Réadaption, C.H.U. Raymonde-Poincaré, Garches, France.
Jean-Luc
JL
Truelle
Department of Medical Psychology and Medical Sociology, Georg-August-University, Goettingen, Germany.
Nicole
N
von Steinbüchel
Psychology, Department of Neurosurgery and Early Neurotraumatological Rehabilitation, Clemens Hospital, Westfalian Wilhelms University of Münster, Münster, Germany.
Klaus
K
von Wild
Department of Psychology, University of Stirling, Stirling, UK.
Lindsay
L
Wilson
IRCCS San Camillo Hospital Foundation, Venezia-Lido, Italy.
Jessica
J
Rigon
Pediatric Neurology Unit, A. Meyer Children's Hospital, University of Florence, Florence, Italy.
Carmen
C
Barba
Department of Engineering, University of Naples, Parthenope, Naples, Italy.
Antonio
A
Forcina
National Institute of Health, Viale Regina Elena 299, 00161, Rome, Italy. marco.giustini@iss.it.
Marco
http://orcid.org/0000-0003-2691-1956
M
Giustini
D000293:Adolescent; D000328:Adult; D000368:Aged; D001364:Awareness; D000070642:Brain Injuries, Traumatic / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D012649:Self Concept; D055815:Young Adult
Caregiver; Health-related quality of life; Self-awareness; Traumatic brain injury