Schifferdecker Karen E, Butcher Rebecca L, Knight Erin, Creek Emily, Schrandt M Suzanne, Marrow Laura, Jaffe Marie, Vinci Arlene, Eakin Guy
Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire.
Dartmouth College Geisel School of Medicine, Hanover, New Hampshire.
ACR Open Rheumatol. 2020 Dec;2(12):750-759. doi: 10.1002/acr2.11203. Epub 2020 Nov 25.
Patient-reported outcome measures (PROMs) are increasingly used in clinical settings but may not provide benefits to patients outside of health encounters. The Arthritis Foundation's Live Yes! Network provides an opportunity for PROM use by individuals and the network that assists individuals with managing their arthritis between encounters. Our objective was to develop a patient-reported outcomes platform for the network, Live Yes! INSIGHTS, using mixed methods and extensive stakeholder input.
A mixed methods longitudinal transformation design was used, starting with semistructured interviews to specify the main priorities of the program, literature review to identify potential PROMs, modified Delphi and nominal group technique to select final PROMs, and focus groups to guide program implementation, messaging, and use of results. We gathered input from 93 participants, including from individuals living with arthritis (74% of participants), caregivers, providers, researchers, and measurement experts.
Our mixed methods study resulted in the selection of Patient-Reported Outcomes Measurement Information System (PROMIS)-29, PROMIS Emotional Support Short Form v2.0, and the Health Care Empowerment Questionnaire, to be deployed through a Qualtrics platform. Triangulation of data resulted in identification of potential risks and benefits, including confidentiality, ability to personally track and share data, and an opportunity to contribute to research.
An accessible measurement system backed by psychometrically strong PROMs, created with robust stakeholder engagement, and linked to a national patient network sets the stage for individuals with arthritis to better monitor and improve health outcomes both outside and inside health care settings and for the network to customize programming to meet needs.
患者报告结局测量指标（PROMs）在临床环境中使用得越来越频繁，但可能不会给健康诊疗之外的患者带来益处。关节炎基金会的“积极生活！”网络为个人使用PROMs提供了机会，该网络还能在诊疗间隙协助个人管理关节炎。我们的目标是为该网络开发一个患者报告结局平台——“积极生活！见解”，采用混合方法并广泛征求利益相关者的意见。
采用混合方法纵向转型设计，首先进行半结构化访谈以明确项目的主要优先事项，进行文献综述以确定潜在的PROMs，采用改良德尔菲法和名义群体技术来选择最终的PROMs，通过焦点小组来指导项目实施、信息传递及结果应用。我们收集了93名参与者的意见，包括患有关节炎的个体（占参与者的74%）、护理人员、医疗服务提供者、研究人员和测量专家。
我们的混合方法研究最终选择了患者报告结局测量信息系统（PROMIS）-29、PROMIS情感支持简表v2.0和医疗保健赋权问卷，通过Qualtrics平台进行部署。数据三角互证识别出了潜在的风险和益处，包括保密性、个人跟踪和共享数据的能力以及参与研究的机会。
一个由心理测量学上强大的PROMs支持、通过强大的利益相关者参与创建并与全国患者网络相连接的可访问测量系统，为患有关节炎的个体更好地监测和改善医疗保健环境内外的健康结局奠定了基础，也为该网络根据需求定制项目创造了条件。
