Formisano Rita, Silvestro Daniela, Azicnuda Eva, Longo Eloïse, Barba Carmen, Rigon Jessica, D'Ippolito Mariagrazia, Giustini Marco, Bivona Umberto
IRCCS, Rehabilitation Hospital Santa Lucia Foundation, Via Ardeatina 306, 00142, Rome, Italy.
Department of Psychology, Sapienza University of Rome, Rome, Italy.
Intern Emerg Med. 2017 Mar;12(2):187-198. doi: 10.1007/s11739-016-1536-1. Epub 2016 Sep 29.
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.
验证脑损伤后生活质量（QOLIBRI）问卷的代理版本，以便利用照顾者进行比较，并评估患者自我认知与照顾者对患者健康相关生活质量（HRQoL）认知之间的对应关系。纳入了92例重度创伤性脑损伤患者及其主要照顾者。分别通过患者QOLIBRI（Pt-QOLIBRI）和代理QOLIBRI（Pro-QOLIBRI）评估患者和照顾者的HRQoL。Pro-QOLIBRI是QOLIBRI的修改版本，用于调查照顾者对患者HRQoL的认知（以患者为中心的Pro-QOLIBRI）及其满意度和困扰程度（以照顾者为中心的Pro-QOLIBRI）。通过格拉斯哥扩展预后量表和社区融入问卷调查患者的残疾情况及其社会重新融入情况。Pro-QOLIBRI具有良好的内部一致性和同质性。Pro-QOLIBRI而非Pt-QOLIBRI所测量的满意度水平与患者的残疾严重程度和社会融入之间也存在正相关。Pt-QOLIBRI与Pro-QOLIBRI之间的比较证实了Pro-QOLIBRI的有用性，尤其是以照顾者为中心的版本，可用于预测幸存者的社会重新融入情况。据我们所知，这是第一项将幸存者自我认知以及照顾者认知的HRQoL与社会重新融入相关联的研究。
