Hull York Medical School,University of Hull, Hull, UK.
University of Exeter Medical School, University of Exeter, Exeter, UK.
Age Ageing. 2021 Jun 28;50(4):1314-1320. doi: 10.1093/ageing/afab053.
to compare care staff proxies with care home residents' self-assessment of their health-related quality of life (HRQoL).
we assessed the degree of inter-rater reliability between residents and care staff proxies for the EQ-5D-5L index, domains and EQ Visual Analogue Scale at baseline, 3 months and 6 months, collected as part of the PATCH trial. We calculated kappa scores. Interpreted as <0 no agreement, 0-0.2 slight, 0.21-0.60 fair to moderate and >0.6 substantial to almost perfect agreement. Qualitative interviews with care staff and researchers explored the challenges of completing these questions.
over 50% of the HRQoL data from residents was missing at baseline compared with a 100% completion rate by care staff proxies. A fair-to-moderate level of agreement was found for the EQ-5D-5L index. A higher level of agreement was achieved for the EQ-5D-5L domains of mobility and pain. Resident 'non-completers' were more likely to: be older, have stayed a longer duration in the care home, have lower Barthel Index and Physical Activity and Mobility in Residential Care (PAM-RC) scores, a greater number of co-morbidities and have joined the trial through consultee agreement. Interviews with staff and researchers indicated that it was easier to rate residents' mobility levels than other domains, but in general it was difficult to obtain data from residents or to make an accurate proxy judgement for those with dementia.
whilst assessing HRQoL by care staff proxy completion provides a more complete dataset, uncertainty remains as to how representative these values are for different groups of residents within care homes.
比较护理人员代表和养老院居民对自身健康相关生活质量（HRQoL）的自我评估。
我们评估了居民和护理人员代表在基线、3 个月和 6 个月时对 EQ-5D-5L 指数、各领域和 EQ 视觉模拟量表的评分者间一致性程度，这些数据是 PATCH 试验的一部分。我们计算了 Kappa 评分。解释为 <0 无一致性，0-0.2 轻微，0.21-0.60 为公平至中度，>0.6 为实质性至几乎完美的一致性。对护理人员和研究人员进行定性访谈，探讨完成这些问题的挑战。
与护理人员代表 100%完成率相比，基线时居民的 HRQoL 数据有超过 50%缺失。EQ-5D-5L 指数显示出公平至中度的一致性水平。EQ-5D-5L 移动性和疼痛领域的一致性水平更高。居民“未完成者”更有可能：年龄更大，在养老院停留时间更长，Barthel 指数和物理活动及住宅护理移动性（PAM-RC）评分更低，共病数量更多，且通过顾问同意加入试验。与工作人员和研究人员的访谈表明，评估居民的移动水平比评估其他领域更容易，但总体而言，很难从居民那里获得数据，或者很难为那些患有痴呆症的居民做出准确的代理判断。
虽然通过护理人员代表完成来评估 HRQoL 可以提供更完整的数据集，但对于养老院中不同群体的居民，这些值的代表性仍然存在不确定性。
