肌萎缩侧索硬化症患者及其照料者的个体及健康相关生活质量评估
Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers.
作者信息
Lo Coco Gianluca, Lo Coco Daniele, Cicero Viviana, Oliveri Antonino, Lo Verso Girolamo, Piccoli Federico, La Bella Vincenzo
机构信息
Dipartimento di Psicologia, Università degli Studi di Palermo, Viale Delle Scienze, Edificio 15, 90128, Palermo, Italy.
出版信息
J Neurol Sci. 2005 Nov 15;238(1-2):11-7. doi: 10.1016/j.jns.2005.05.018. Epub 2005 Aug 18.
We performed a cross-sectional study aimed to address the quality of life (QoL) and putative associated variables in amyotrophic lateral sclerosis (ALS) patients and their respective caregivers, using both health-related (WHOQOL-BREF) and individual (SEIQoL-DW) QoL instruments. Further, we sought to investigate concordance within patient-caregiver pairs for ratings of respective QoL. Thirty-seven patient-caregiver pairs were included in the study. QoL was rated low by both patients and caregivers, and there was no significant difference between them on scores of overall QoL, even if caregivers showed higher scores on the physical and psychological WHOQOL-BREF domains compared to patients. No correlation could be found between QoL of both patients and caregivers and all the examined socio-demographic variables. Moreover, concordance between patients and respective caregivers was low for ratings of QoL, suggesting that their QoL is not necessarily interrelated, and that these couples do not actually represent a unique psychological entity. Interestingly, physical dysfunction, measured with the ALS-FRS, was not significantly correlated with caregivers' individual QoL scores. The most frequently nominated SEIQoL-DW cues were related to health (physical and psychological) and family for both patients and caregivers, and there was high agreement for the choice of areas important for subject's QoL. Interestingly, patients and caregivers who endorsed spirituality as a significant domain reported better QoL. Our study confirms that ALS has a negative impact on QoL in both patients and caregivers. However, caregivers who present lower QoL levels are not always those who have to look after the most physically or psychologically impaired patients. Major attention on QoL issues of both patients and caregivers, family status, and health perception, integrated with the medical evaluation, could lead to a better understanding of the problems related to the caregiving experience, and could help couples dealing with this life-threatening disease.
我们开展了一项横断面研究,旨在使用与健康相关的(世界卫生组织生活质量简表,WHOQOL-BREF)和个体生活质量(疾病影响量表-直接权重法,SEIQoL-DW)测量工具,探讨肌萎缩侧索硬化症(ALS)患者及其各自照料者的生活质量(QoL)以及假定的相关变量。此外,我们试图研究患者-照料者配对之间在各自生活质量评分上的一致性。本研究纳入了37对患者-照料者配对。患者和照料者对生活质量的评分均较低,即使照料者在WHOQOL-BREF量表的身体和心理领域得分高于患者,但他们在总体生活质量得分上并无显著差异。患者和照料者的生活质量与所有经检查的社会人口统计学变量之间均未发现相关性。此外,患者与各自照料者在生活质量评分上的一致性较低,这表明他们的生活质量不一定相互关联,且这些配对实际上并不代表一个独特的心理实体。有趣的是,用ALS功能评定量表(ALS-FRS)测量的身体功能障碍与照料者的个体生活质量得分并无显著相关性。对于患者和照料者而言,疾病影响量表-直接权重法中最常被提及的提示因素均与健康(身体和心理)及家庭有关,并且在对受试者生活质量重要的领域选择上存在高度一致性。有趣的是,将精神性视为重要领域的患者和照料者报告的生活质量更好。我们的研究证实,ALS对患者和照料者的生活质量均有负面影响。然而,生活质量水平较低的照料者并不总是那些需要照顾身体或心理受损最严重患者的人。在医学评估的基础上,对患者和照料者的生活质量问题、家庭状况以及健康认知给予主要关注,可能有助于更好地理解与照料经历相关的问题,并有助于这些伴侣应对这种危及生命的疾病。