Hughes Anastasia, Ju Angela, Cazzolli Rosanna, Howell Martin, Caskey Fergus J, Elliott Meghan J, Farragher Janine, Greenwood Sharlene, Levin Adeera, Manera Karine, Sluiter Amanda, Teixeira-Pinto Armando, Trimarchi Hernán, Wang Bill, Guha Chandana, Wu Rebecca, Jauré Allison
Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.
Clin Kidney J. 2024 Nov 12;18(1):sfae341. doi: 10.1093/ckj/sfae341. eCollection 2025 Jan.
The symptoms, comorbidities and treatment burden associated with chronic kidney disease (CKD) can be debilitating and limit life participation in patients with CKD not requiring kidney replacement therapy (KRT). The aim of this study was to identify the characteristics, content and psychometric properties of patient-reported outcome measures (PROMs) used to assess life participation in patients with CKD.
We searched MEDLINE, Embase, PsycINFO and CINAHL from database inception to February 2023 for all studies that reported life participation in patients with CKD (stages 1-5 not requiring kidney replacement therapy). We analysed the characteristics, dimensions of life participation and psychometric properties of the measures.
From the 114 studies included, 20 (18%) were randomized trials, 3 (3%) were non-randomized trials and 91 (80%) were observational studies. Forty-one different measures were used to assess life participation, of which six (15%) were author-developed measures. Twelve (29%) measures assessed life participation specifically, while 29 (71%) measures assessed broader constructs such as quality of life, which included questions relevant to life participation. The 36-Item Short Form Health Survey (SF-36) and Kidney Disease Quality of Life Short Form (KDQOL-SF) were the most frequently used, in 39 (34%) and 24 (21%) studies, respectively. Many content domains for life participation were assessed, including physical activities (walking, running and sports), social activities, leisure activities, work or study and self-care. None of the measures for life participation were developed specifically for CKD. Four measures (EuroQol 5-dimension 3-level (EQ-5D-3L), Functional Assessment of Cancer Therapy - Anemia, Short Form 6-dimension and Short-From 36-dimension (SF-36)) had validation data collected in patients with CKD.
The measures for life participation used in patients with CKD vary in content, with few validated in the CKD population. There is a need for a validated measure to assess life participation in a meaningful and consistent way in all patients with CKD worldwide.
慢性肾脏病（CKD）相关的症状、合并症及治疗负担可能使人衰弱，并限制了不需要肾脏替代治疗（KRT）的CKD患者的生活参与度。本研究的目的是确定用于评估CKD患者生活参与度的患者报告结局量表（PROMs）的特征、内容和心理测量特性。
我们检索了MEDLINE、Embase、PsycINFO和CINAHL数据库，从建库至2023年2月，查找所有报告CKD患者（1-5期，不需要肾脏替代治疗）生活参与度的研究。我们分析了这些量表的特征、生活参与度维度和心理测量特性。
在纳入的114项研究中，20项（18%）为随机试验，3项（3%）为非随机试验，91项（80%）为观察性研究。使用了41种不同的量表来评估生活参与度，其中6种（15%）是作者自行编制的量表。12种（29%）量表专门评估生活参与度，而29种（71%）量表评估更广泛的概念，如生活质量，其中包括与生活参与度相关的问题。36项简短健康调查（SF-36）和肾脏病生活质量简表（KDQOL-SF）是使用最频繁的，分别在39项（34%）和24项（21%）研究中使用。评估了许多生活参与度的内容领域，包括身体活动（步行、跑步和运动）、社交活动、休闲活动、工作或学习以及自我护理。没有一种生活参与度量表是专门为CKD开发的。四种量表（欧洲五维度健康量表3级（EQ-5D-3L）、癌症治疗功能评估-贫血量表、6维度简表和36维度简表（SF-36））在CKD患者中收集了验证数据。
CKD患者使用的生活参与度量表在内容上各不相同，在CKD人群中经过验证的量表很少。全球范围内需要一种经过验证的量表，以有意义且一致的方式评估所有CKD患者的生活参与度。
