van der Wees Philip J, Verkerk Eva W, Verbiest Marjolein E A, Zuidgeest Marloes, Bakker Carla, Braspenning Jozé, de Boer Dolf, Terwee Caroline B, Vajda Ildikó, Beurskens Anna, van Dulmen Simone A
Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, the Netherlands.
Tilburg University, Tilburg School of Social and Behavioral Sciences, Tilburg, The Netherlands.
J Patient Rep Outcomes. 2019 Dec 30;3(1):75. doi: 10.1186/s41687-019-0171-9.
Patient reported outcomes (PROs) provide information on a patient's health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in clinical practice for individual patient care, as well as in quality improvement, and for providing transparency of outcomes to stakeholders through public reporting. However, current knowledge of selecting and implementing PROMs for these purposes is scattered, and not readily available for clinicians and quality managers in healthcare organizations. The objective of this study is to develop a framework with tools to support the systematic selection, implementation and evaluation of PROs and PROMs in individual patient care, for quality improvement and public reporting.
We developed the framework in a national project in the Netherlands following a user-centered design. The development process of the framework contained five iterative components: (a) identification of existing tools, (b) identification of user requirements and designing steps for selection and implementation of PROs and PROMs, (c) discussing a prototype of the framework during a national workshop, (d) developing a web version, (e) pre-testing of the framework. A total of 40 users with different perspectives (clinicians, patient representatives, quality managers, purchasers, researchers) have been consulted.
The final framework is presented as the PROM-cycle that consists of eight steps in four phases: (1) goal setting, (2) selecting PROs and PROMs, (3) developing and testing of quality indicator(s), (4) implementing and evaluating the PROM(s) and indicator(s). Users emphasized that the first step is the key element in which the why, for whom and setting of the PROM has to be defined. This information is decisive for the following steps. For each step the PROM-cycle provides guidance and tools, with instruments, checklists, methods, handbooks, and standards supporting the process.
We developed a framework to support the selection and implementation of PROs and PROMs. Each step provides guidance and tools to support the process. The PROM-cycle and its tools are publicly available and can be used by clinicians, quality managers, patient representatives and other experts involved in using PROMS. Through periodic evaluation and updates, tools will be added for national and international use of the PROM-cycle.
患者报告结局（PROs）提供了直接来自患者的关于其健康状况的信息。使用患者报告结局测量工具（PROMs）来测量PROs在临床实践中已引起广泛关注，可用于个体患者护理、质量改进以及通过公开报告向利益相关者提供结局透明度。然而，目前关于为这些目的选择和实施PROMs的知识较为零散，医疗保健机构的临床医生和质量管理人员难以获取。本研究的目的是开发一个包含工具的框架，以支持在个体患者护理中对PROs和PROMs进行系统选择、实施和评估，用于质量改进和公开报告。
我们在荷兰的一个国家项目中遵循以用户为中心的设计方法开发了该框架。框架的开发过程包含五个迭代组件：（a）识别现有工具；（b）识别用户需求并设计PROs和PROMs选择与实施步骤；（c）在全国研讨会上讨论框架原型；（d）开发网络版；（e）对框架进行预测试。共咨询了40位具有不同视角的用户（临床医生、患者代表、质量管理人员、采购人员、研究人员）。
最终框架以PROM循环的形式呈现，包括四个阶段的八个步骤：（1）目标设定；（2）选择PROs和PROMs；（3）制定和测试质量指标；（4）实施和评估PROMs及指标。用户强调第一步是关键要素，必须明确PROM的目的、适用对象和背景。这些信息对后续步骤起决定性作用。对于每个步骤，PROM循环都提供指导和工具，包括支持该过程的仪器、清单、方法、手册和标准。
我们开发了一个支持PROs和PROMs选择与实施的框架。每个步骤都提供指导和工具以支持该过程。PROM循环及其工具已公开可用，临床医生、质量管理人员、患者代表以及参与使用PROMs的其他专家均可使用。通过定期评估和更新，将添加适用于PROM循环在国内和国际使用的工具。
