Orgeta Vasiliki, Edwards Rhiannon Tudor, Hounsome Barry, Orrell Martin, Woods Bob
Division of Psychiatry, University College London, 67-73 Riding House Street, 2nd Floor, Charles Bell House, London, W1W 7EJ, UK,
Qual Life Res. 2015 Feb;24(2):315-24. doi: 10.1007/s11136-014-0770-0. Epub 2014 Aug 17.
To assess the acceptability, validity and inter-rater agreement of self- and family carer proxy ratings of the EQ-5D as a generic health-related quality of life (HRQOL) measure, in people with mild to moderate dementia (PwD) living in the community. A secondary aim was to identify the most important factors influencing self- and family carer proxy ratings of HRQOL, distinguishing between spouse and adult child caregiver ratings.
Cross-sectional study of 488 dyads using the EQ-5D. Inter-rater agreement was examined using weighted kappa scores, and validity by investigating the association of self- and family carer ratings with clinical variables. Factors affecting HRQOL ratings were analysed using multivariate regression.
The response rate of the EQ-5D was satisfactory; however, agreement between self- and family carer ratings was poor. The most important predictors of PwD and carer ratings of the PwD's HRQOL were family carer ratings of activities of daily living and mood. Anxiety experienced by the PwD was a significant predictor of self-rated HRQOL, whereas depressive symptoms independently predicted family carer ratings. The type of the caregiving relationship influenced carer ratings of HRQOL, whereby sons and daughters rated HRQOL lower for the PwD compared with spousal caregivers.
People with mild to moderate dementia are able to rate their own HRQOL through a brief generic instrument; however, self-ratings consistently differ from family carer ratings, which should be acknowledged in cost-effectiveness analyses. Spouse caregivers rate HRQOL for the PwD more positively compared to adult children.
评估作为一种通用的健康相关生活质量（HRQOL）测量工具的EQ-5D自评和家庭照顾者代理评分在社区中轻度至中度痴呆症患者（PwD）中的可接受性、有效性和评分者间一致性。次要目的是确定影响HRQOL自评和家庭照顾者代理评分的最重要因素，区分配偶和成年子女照顾者的评分。
使用EQ-5D对488对受试者进行横断面研究。使用加权kappa分数检查评分者间一致性，并通过调查自评和家庭照顾者评分与临床变量之间的关联来检验有效性。使用多元回归分析影响HRQOL评分的因素。
EQ-5D的应答率令人满意；然而，自评和家庭照顾者评分之间的一致性较差。PwD及其照顾者对PwD的HRQOL评分的最重要预测因素是家庭照顾者对日常生活活动和情绪的评分。PwD经历的焦虑是自评HRQOL的重要预测因素，而抑郁症状独立预测家庭照顾者评分。照顾关系的类型影响照顾者对HRQOL的评分，与配偶照顾者相比，子女对PwD的HRQOL评分较低。
轻度至中度痴呆症患者能够通过一种简短的通用工具对自己的HRQOL进行评分；然而，自评与家庭照顾者评分始终存在差异，这在成本效益分析中应予以承认。与成年子女相比，配偶照顾者对PwD的HRQOL评分更积极。
