Datasheet1_Achieving reliable patient reported outcomes collection to measure health care improvement in a learning health network: lessons from pediatric rheumatology care and outcomes improvement network.docx

IntroductionData from the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) registry suggests that reliable collection of patient-reported outcomes (PROs) varies across sites. The objective of this study was to better understand the practices of collecting PROs at PR-COIN sites.
MethodsA REDCap survey was sent to the lead representative for each PR-COIN site. Registry data were analyzed to better understand the completion rates of PROs. Interviews of physician leaders of high performing sites were conducted by videoconference, audiotranscribed and themes were summarized. Quantitative data were analyzed using descriptive statistics and qualitative data were thematically analyzed.
ResultsAll 23 PR-COIN sites responded to the survey. PROs were collected by 21/23 (91%) sites. Arthritis-related pain intensity, morning stiffness, and physical function were the top three collected PROs (
Supplementary 3 and 4). PROs were collected using paper, electronically or in combination, with most sites collecting PROs only on paper. PROs were manually scored at most sites. Among sites with electronic PRO collection, 42% did not have automatic transfer of scores into the electronic medical record. Facilitators to successful collection of PROs included availability of staff, training, and culture. Barriers to PRO collection cited were limited time, lack of infrastructure, and lack of staff. Completion rates of PROs in the registry in top 4 performing centers for morning stiffness was 100%, overall well-being and pain intensity scores ranged from 93%–98%, and for physical function 69%–94%. Interviews with physician leaders indicated that their site overcame barriers through: integration of PRO collection into workflow, gaining buy-in of stakeholders (clinicians and patients), and automating PRO collection. Interviewees endorsed automation of data collection (e.g., self-completion on tablets) and automated transfer to electronic medical record (EMR) as key components enabling reliable PRO collection.
ConclusionsThrough understanding our current ability to systematically collect PROs across all sites in PR-COIN and exploring successful implementation of PRO collection both within and outside our learning health network, we share lessons learned and identify the most influential factors for successful PRO collection in pediatric rheumatology.

引言
儿科风湿病学护理与结局改善网络（Pediatric Rheumatology Care and Outcomes Improvement Network, PR-COIN）登记库的数据显示，各中心的患者报告结局指标（patient-reported outcomes, PROs）收集可靠性存在差异。本研究旨在深入了解PR-COIN各中心的PROs收集实践情况。

方法
本研究向每个PR-COIN中心的牵头代表发送了REDCap问卷。对登记库数据进行分析，以明确PROs的完成率。通过视频会议对高绩效中心的科室负责人进行访谈，将访谈内容录音转写后进行主题总结。定量数据采用描述性统计方法分析，定性数据采用主题分析法进行编码分析。

结果
所有23家PR-COIN中心均完成了问卷回复。其中21家（91%）中心开展了PROs收集工作。关节炎相关疼痛强度、晨僵及躯体功能是位列前三的收集PROs类别（详见补充材料3与4）。PROs收集方式包括纸质版、电子版或二者结合，多数中心仅采用纸质版收集。多数中心采用人工评分方式对PROs进行计分。在采用电子版PROs收集的中心中，42%未实现评分自动导入电子病历（electronic medical record, EMR）系统。PROs成功收集的促进因素包括人员配备充足、培训支持及科室文化氛围。被提及的PROs收集障碍包括时间有限、基础设施不足及人员短缺。在表现排名前四的中心中，晨僵PROs的完成率为100%，总体健康状况及疼痛强度评分的完成率为93%~98%，躯体功能评分的完成率为69%~94%。对科室负责人的访谈显示，各中心通过以下方式克服了收集障碍：将PROs收集流程整合至日常工作流、获得利益相关方（临床医师与患者）的支持、实现PROs收集自动化。受访者认可自动化数据收集（如通过平板电脑自主完成填报）及评分自动导入电子病历系统为实现PROs可靠收集的关键要素。

结论
本研究通过明确PR-COIN所有中心目前系统性收集PROs的能力，并探索本学习型医疗网络内外PROs收集的成功实施经验，总结了可借鉴的经验教训，并明确了儿科风湿病学领域实现PROs可靠收集的核心影响因素。