Baragar Brigitte H, Schorr Melissa, Verdin Nancy, Woodlock Tania, Clark David A, Hundemer Gregory L, Mathew Anna, Mustafa Reem A, Ryz Krista S, Harrison Tyrone G
Department of Medicine, University of Manitoba, Winnipeg, Canada.
Department of Medicine, Western University, London, ON, Canada.
Can J Kidney Health Dis. 2023 Nov 24;10:20543581231207142. doi: 10.1177/20543581231207142. eCollection 2023.
Despite efforts to provide evidence-based care for people living with kidney disease, health care provider goals and priorities are often misaligned with those of individuals with lived experience of disease. Coupled with competing interests of time, resources, and an abundance of suitable guideline topics, identifying and prioritizing areas of focus for the Canadian nephrology community with a patient-oriented perspective is necessary and important. Similar priority-setting exercises have been undertaken to establish research priorities for kidney disease and to standardize outcomes for kidney disease research and clinical care; however, research priorities are distinct from priorities for guideline development. Inclusion of people living with health conditions in the selection and prioritization of guideline topics is suggested by patient engagement frameworks, though the process to operationalizing this is variable. We propose that the Canadian Society of Nephrology Clinical Practice Guideline Committee (CSN CPGC) takes the opportunity at this juncture to incorporate evidence-based prioritization exercises with involvement of people living with kidney disease and their caregivers to inform future guideline activities. In this protocol, we describe our planned research methods to address this.
To establish consensus-based guideline topic priorities for the CSN CPGC using a modified Delphi survey with involvement of multidisciplinary stakeholders, including people living with kidney disease and their caregivers.
Protocol for a Modified Delphi Survey.
Pilot-tested surveys will be distributed via email and conducted using the online platform SurveyMonkey, in both French and English.
We will establish a group of multidisciplinary clinical and research stakeholders (both within and outside CSN membership) from Canada, in addition to people living with kidney disease and/or their caregivers.
A comprehensive literature search will be conducted to generate an initial list of guideline topics, which will be organized into three main categories: (1) International nephrology-focused guidelines that may require Canadian commentary, (2) Non-nephrology specific guidelines from Canada that may require CSN commentary, and (3) Novel topics for guideline development. Participants will engage in a multi-round Modified Delphi Survey to prioritize a set of "important guideline topics."
Consensus will be reached for an item based on both median score on the Likert-type scale (≥ 7) and the percentage agreement (≥ 75%); the Delphi process will be complete when consensus is reached on each item. Guideline topics will then be given a priority score calculated from the total Likert ratings across participants, adjusted for the number of participants.
Potential limitations include participant response rates and compliance to survey completion.
We propose to incorporate evidence-based prioritization exercises with the engagement of people living with kidney disease and their caregivers to establish consensus-based guideline topics and inform future guidelines activities of the CSN CPGC.
尽管一直在努力为肾病患者提供循证护理，但医疗服务提供者的目标和优先事项往往与有疾病亲身经历的患者不一致。再加上时间、资源方面的利益冲突以及大量合适的指南主题，从以患者为导向的角度确定加拿大肾脏病学界的重点关注领域并进行优先排序既必要又重要。已经开展了类似的确定优先事项的活动，以确立肾病研究的优先事项，并使肾病研究和临床护理的结果标准化；然而，研究优先事项与指南制定的优先事项是不同的。患者参与框架建议在指南主题的选择和优先排序中纳入有健康状况的人群，不过将其付诸实施的过程各不相同。我们建议加拿大肾脏病学会临床实践指南委员会（CSN CPGC）在此时机利用基于证据的优先排序活动，让肾病患者及其护理人员参与进来，为未来的指南活动提供信息。在本方案中，我们描述了为解决此问题而计划采用的研究方法。
通过一项经过改进的德尔菲调查，让包括肾病患者及其护理人员在内的多学科利益相关者参与，为CSN CPGC确定基于共识的指南主题优先事项。
一项经过改进的德尔菲调查方案。
预先测试的调查问卷将通过电子邮件分发，并使用在线平台SurveyMonkey以法语和英语进行。
除了肾病患者和/或其护理人员外，我们将组建一个来自加拿大的多学科临床和研究利益相关者群体（包括CSN成员内外的人员）。
将进行全面的文献检索以生成指南主题的初始清单，该清单将分为三大类：（1）可能需要加拿大注释的以国际肾脏病学为重点的指南，（2）可能需要CSN注释的加拿大非肾脏病学特定指南，以及（3）指南制定的新主题。参与者将参与一轮多轮的改进德尔菲调查，以对一组“重要的指南主题”进行优先排序。
基于李克特量表的中位数得分（≥7）和一致同意率（≥75%）就一个项目达成共识；当每个项目都达成共识时，德尔菲过程即完成。然后根据参与者的总李克特评分计算指南主题的优先得分，并根据参与者数量进行调整。
潜在的局限性包括参与者的回复率和完成调查的依从性。
我们建议结合基于证据的优先排序活动以及肾病患者及其护理人员的参与，以确立基于共识的指南主题，并为CSN CPGC未来的指南活动提供信息。
