Zucchella Chiara, Bartolo Michelangelo, Bernini Sara, Picascia Marta, Sinforiani Elena
*Laboratory of Neuropsychology/Alzheimer Assessment Unit, IRCCS Neurological National Institute C. Mondino Foundation †Department of Public Health, Neuroscience, Experimental and Forensic Medicine, University of Pavia, Pavia ‡Neurorehabilitation Unit, IRCCS NEUROMED, Pozzilli (Isernia), Italy.
Alzheimer Dis Assoc Disord. 2015 Jan-Mar;29(1):50-4. doi: 10.1097/WAD.0000000000000050.
Unlike in other chronic diseases, the Quality of Life (QoL) of patients affected by Alzheimer Disease (AD) has not been well established, primarily because of the difficulties stemming from the study of patients with cognitive disorders. Because no cure is currently available for AD, the optimization of QoL represents the best possible outcome attainable in all stages of disease, making QoL assessment mandatory. This study identified variables related to patients' QoL and examined the agreement between patients' and caregivers' QoL ratings. A total of 135 dyads (patient and principal caregiver) were enrolled in the study. Patients' QoL evaluations showed a negative relationship with depressive mood and a positive relationship with Activities of Daily Living (ADL), whereas caregivers' QoL ratings showed a negative relationship with patients' depressive mood and behavioral disturbances. Caregivers tended to underestimate patients' QoL compared with the patients' own self-evaluations, with patients' dependency in performing ADL and behavioral disorders as well as caregivers' burdens and depression being the main factors associated with the discrepancy in these evaluations. These findings suggest that the use of proxies as a substitute for the self-report of QoL data should be treated with caution, always accounting for the presence of potential bias.
与其他慢性疾病不同，阿尔茨海默病（AD）患者的生活质量（QoL）尚未得到很好的确立，主要是因为对认知障碍患者进行研究存在困难。由于目前尚无治愈AD的方法，生活质量的优化是疾病各个阶段所能达到的最佳结果，因此生活质量评估必不可少。本研究确定了与患者生活质量相关的变量，并考察了患者与照料者生活质量评分之间的一致性。共有135对（患者和主要照料者）参与了本研究。患者的生活质量评估显示与抑郁情绪呈负相关，与日常生活活动（ADL）呈正相关，而照料者的生活质量评分则与患者的抑郁情绪和行为障碍呈负相关。与患者自身的自我评价相比，照料者往往低估患者的生活质量，患者在进行日常生活活动时的依赖性和行为障碍以及照料者的负担和抑郁是这些评估差异的主要相关因素。这些发现表明，使用他人代理报告替代生活质量数据的自我报告时应谨慎对待，始终要考虑到潜在偏差的存在。
