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痴呆患者及其照护者的生活质量观点:来自南亚人群的证据。

Patient and caregiver perspectives on quality of life in dementia: Evidence from a South Asian population.

机构信息

Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.

Department of Community Medicine, Faculty of Medicine, University of Colombo, Colombo, Sri Lanka.

出版信息

PLoS One. 2023 May 18;18(5):e0285701. doi: 10.1371/journal.pone.0285701. eCollection 2023.

DOI:10.1371/journal.pone.0285701
PMID:37200258
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10194915/
Abstract

Dementia has become a public health priority along with population ageing worldwide. Owing to its chronic progressive nature in the absence of a cure, maintaining the best possible quality of life (QOL) has become the desired outcome for people with dementia. The aim of this study was to compare the Quality of Life (QOL) of patients with dementia in Sri Lanka when assessed based on the patient's and caregiver's perspectives. A cross-sectional study was conducted among 272 pairs of patients with dementia and their primary caregivers recruited systematically from the psychiatry outpatient clinics of tertiary care state hospitals in the district of Colombo, Sri Lanka. The QOL was assessed using the 28-item DEMQOL among patients and the 31-item DEMQOL-proxy among primary caregivers. The total QOL ratings and subscale scores obtained by patients and caregivers were compared and assessed for the significance of the mean scores using the independent t-test and of the mean difference in ratings using the Wilcoxon test. Agreement between patients and their caregivers on the ratings for QOL was also assessed using the Bland Altman plot. The mean overall QOL score according to patient ratings (mean = 79.7; SD = 12.0) was significantly higher than the caregiver ratings (mean = 70.6; SD = 12.3) (p< 0.001). Mean scores for the four subscales (positive emotion, negative emotion, memory, and daily life) were also significantly higher according to the patient's ratings (p<0.001). Total scores obtained by patients and their caregivers showed a positive and significant correlation (r = 0.385; p<0.001). Bland Altman plot demonstrated acceptable agreement between their ratings. The study confirms the ability of dementia patients with mild to moderate severity to successfully rate their own QOL. Furthermore, the caregiver's ratings cannot be substituted for the patient's ratings and vice versa.

摘要

痴呆症已成为全球人口老龄化背景下的一项公共卫生重点。由于痴呆症缺乏治愈方法,其呈慢性进行性发展,因此保持尽可能好的生活质量 (QOL) 已成为痴呆症患者的期望目标。本研究旨在比较斯里兰卡痴呆症患者从患者和照护者角度评估的生活质量 (QOL)。这是一项横断面研究,在斯里兰卡科伦坡地区的三级保健州立医院的精神病门诊系统招募了 272 对痴呆症患者及其主要照护者。使用 28 项痴呆症生活质量问卷 (DEMQOL) 评估患者的 QOL,使用 31 项痴呆症生活质量问卷 - 照护者版 (DEMQOL-proxy) 评估主要照护者的 QOL。比较患者和照护者获得的总 QOL 评分和子量表评分,并使用独立 t 检验评估均值评分的显著性,使用 Wilcoxon 检验评估评分均值的差异。还使用 Bland Altman 图评估患者和照护者对 QOL 评分的一致性。根据患者评分,总体 QOL 评分的平均值 (mean = 79.7; SD = 12.0) 显著高于照护者评分 (mean = 70.6; SD = 12.3) (p<0.001)。根据患者评分,四个子量表 (积极情绪、消极情绪、记忆和日常生活) 的平均得分也显著更高 (p<0.001)。患者和照护者获得的总分呈正相关且具有显著性 (r = 0.385; p<0.001)。Bland Altman 图表明其评分具有可接受的一致性。本研究证实了轻度至中度痴呆症患者成功自评其自身 QOL 的能力。此外,照护者的评分不能替代患者的评分,反之亦然。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/18af/10194915/208a57df640a/pone.0285701.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/18af/10194915/208a57df640a/pone.0285701.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/18af/10194915/208a57df640a/pone.0285701.g001.jpg

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本文引用的文献

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