CKD研究中患者和护理人员参与的系统综述

IF 5.7 2区医学 Q1 UROLOGY & NEPHROLOGY

Kidney International Reports Pub Date : 2025-06-01 DOI:10.1016/j.ekir.2025.03.018

Talia Gutman , Dale Coghlan , Jonathan C. Craig , Chandana Guha , Allison Jaure , Shilpanjali Jesudason , Adeera Levin , David M. White , Javier Recabarren Silva , Anita van Zwieten , David Tunnicliffe , Andrea K. Viecelli , Germaine Wong , Armando Teixeira-Pinto , Siah Kim , Stephen McDonald , Carmel M. Hawley , Nicole Scholes-Robertson

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引用次数: 0

摘要

有限的消费者参与慢性肾脏疾病（CKD）研究可能会降低其相关性、影响和在实践和政策中的可转移性。我们的目的是描述消费者（CKD患者和护理人员）参与已发表的CKD研究的现状。方法检索电子数据库至2023年8月。描述消费者参与CKD研究的文章入选。所有的文本都被导入到NVivo中，使用这些领域的描述性综合进行逐行编码：定义参与、参与目的、选择、研究阶段、资源和评估。结果纳入106篇文章，涉及15个国家的4500多名消费者。82篇文章（77%）定义了消费者参与，使用了8个不同的术语。43篇文章（41%）讨论了让消费者参与研究的原因。消费者主要通过基于人口统计学或临床特征的临床或患者网络来确定。高层参与人员（例如共同研究人员/病人伙伴）往往受过医学或学术培训。消费者很少是研究的推动者或委员（n = 6,6%），最有可能作为知情者参与研究（n = 81,76%），决策权力有限。大多数文章描述了消费者参与优先级设置（n = 48, 45%）和研究设计（n = 57, 53%），较少证据表明消费者参与实施（n = 28, 26%）和评估（n = 24, 22%）。障碍包括有限的资源（即财政、后勤或培训）和对量身定制的解决方案的需求仍然存在。消费者的参与增加了招聘和保留，丰富了数据，并为最终用户提供了更有用的输出。结论消费者参与的活动大多是离散的，决策能力有限。增加对消费者的财政、后勤和培训资源可能会支持更有意义的参与。需要对消费者参与的过程或影响进行持续评估，包括一致的报告，以加强CKD研究的证据和实践。

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Systematic Review of Patient and Caregiver Involvement in CKD Research

Introduction

Limited consumer involvement in chronic kidney disease (CKD) research may reduce its relevance, impact, and transferability into practice and policy. We aimed to describe the current landscape of consumer (patients with CKD and caregivers) involvement in published CKD research.

Methods

Electronic databases were searched to August 2023. Articles describing consumer involvement in CKD research were eligible. All text were imported into NVivo for line-by-line coding using descriptive synthesis of these domains: defining involvement, purpose of involvement, selection, stages of the research, resources, and evaluation.

Results

We included 106 articles that involved over 4500 consumers from 15 countries. Eighty-two articles (77%) defined consumer involvement, using 8 different terms. Forty-three articles (41%) addressed reasons for involving consumers in research. Consumers were predominantly identified through clinical or patient networks based on demographic or clinical characteristics. Those involved at higher levels (e.g., coresearcher/patient partner) often had medical or academic training. Consumers were rarely drivers or commissioners of research (n = 6, 6%) and were most likely to be involved as informants (n = 81, 76%) with limited decision-making power. Most articles described consumer involvement in priority setting (n = 48, 45%) and research design (n = 57, 53%) with less evidence of involvement in implementation (n = 28, 26%) and evaluation (n = 24, 22%). Barriers included limited resources (i.e., financial, logistical, or training) and the need for tailored solutions continue to exist. Consumer involvement resulted in increased recruitment and retention, richer data, and more useful outputs for end users.

Conclusions

Consumers were mostly involved in discrete activities with limited decision-making power. Increasing financial, logistical, and training resources for consumers may support more meaningful involvement. Ongoing evaluation of processes or impacts of consumer involvement, including consistent reporting, is needed to strengthen evidence and practice in CKD research.

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来源期刊

Kidney International Reports Medicine-Nephrology

CiteScore

7.70

自引率

3.30%

发文量

1578

审稿时长

8 weeks

期刊介绍： Kidney International Reports, an official journal of the International Society of Nephrology, is a peer-reviewed, open access journal devoted to the publication of leading research and developments related to kidney disease. With the primary aim of contributing to improved care of patients with kidney disease, the journal will publish original clinical and select translational articles and educational content related to the pathogenesis, evaluation and management of acute and chronic kidney disease, end stage renal disease (including transplantation), acid-base, fluid and electrolyte disturbances and hypertension. Of particular interest are submissions related to clinical trials, epidemiology, systematic reviews (including meta-analyses) and outcomes research. The journal will also provide a platform for wider dissemination of national and regional guidelines as well as consensus meeting reports.