Patient-reported outcome measures for life participation in patients with chronic kidney disease: a systematic review.

IF 3.9 2区医学 Q1 UROLOGY & NEPHROLOGY

Clinical Kidney Journal Pub Date : 2024-11-12 eCollection Date: 2025-01-01 DOI:10.1093/ckj/sfae341

Anastasia Hughes, Angela Ju, Rosanna Cazzolli, Martin Howell, Fergus J Caskey, Meghan J Elliott, Janine Farragher, Sharlene Greenwood, Adeera Levin, Karine Manera, Amanda Sluiter, Armando Teixeira-Pinto, Hernán Trimarchi, Bill Wang, Chandana Guha, Rebecca Wu, Allison Jauré

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Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

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慢性肾脏疾病患者生活参与的患者报告结果测量：系统回顾

背景：与慢性肾脏疾病（CKD）相关的症状、合并症和治疗负担可能使患者衰弱，并限制不需要肾脏替代治疗（KRT）的CKD患者的生活参与。本研究的目的是确定用于评估CKD患者生活参与的患者报告结果测量（PROMs）的特征、内容和心理测量特性。方法：我们检索MEDLINE、Embase、PsycINFO和CINAHL从数据库建立到2023年2月的所有报告CKD患者生活参与（1-5期不需要肾脏替代治疗）的研究。我们分析了生活参与的特征、维度和测量的心理测量特性。结果：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。41种不同的测量方法被用于评估生活参与，其中6种（15%）是作者开发的测量方法。12项（29%）测量具体评估生活参与，而29项（71%）测量评估更广泛的结构，如生活质量，其中包括与生活参与相关的问题。36项健康调查简表（SF-36）和肾脏疾病生活质量简表（KDQOL-SF）是最常用的，分别在39项（34%）和24项（21%）研究中使用。对生活参与的许多内容领域进行了评估，包括身体活动（散步、跑步和运动）、社会活动、休闲活动、工作或学习以及自我保健。没有一项生活参与指标是专门为CKD制定的。四项测量（EuroQol 5-维3-水平（EQ-5D-3L），癌症治疗功能评估-贫血，Short Form 6-维和Short- from 36-维（SF-36））收集了CKD患者的验证数据。结论：用于CKD患者生活参与的测量在内容上有所不同，很少在CKD人群中得到验证。需要一种有效的测量方法，以有意义和一致的方式评估全球所有CKD患者的生活参与。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Clinical Kidney Journal Medicine-Transplantation

CiteScore

6.70

自引率

10.90%

发文量

242

审稿时长

8 weeks

期刊介绍： About the Journal Clinical Kidney Journal: Clinical and Translational Nephrology (ckj), an official journal of the ERA-EDTA (European Renal Association-European Dialysis and Transplant Association), is a fully open access, online only journal publishing bimonthly. The journal is an essential educational and training resource integrating clinical, translational and educational research into clinical practice. ckj aims to contribute to a translational research culture among nephrologists and kidney pathologists that helps close the gap between basic researchers and practicing clinicians and promote sorely needed innovation in the Nephrology field. All research articles in this journal have undergone peer review.