Bhandari Rashmi P, Feinstein Amanda B, Huestis Samantha E, Krane Elliot J, Dunn Ashley L, Cohen Lindsey L, Kao Ming C, Darnall Beth D, Mackey Sean C
Department of Anesthesiology, Perioperative, and Pain Medicine, Stanford University School of Medicine, Stanford, CA, USA.
Department of Psychology, Georgia State University, Atlanta, GA, USA.
Pain. 2016 Sep;157(9):2033-2044. doi: 10.1097/j.pain.0000000000000609.
The pediatric adaptation of the Collaborative Health Outcomes Information Registry (Peds-CHOIR) is a free, open-source, flexible learning health care system (LHS) that meets the call by the Institute of Medicine for the development of national registries to guide research and precision pain medicine. This report is a technical account of the first application of Peds-CHOIR with 3 aims: (1) to describe the design and implementation process of the LHS; (2) to highlight how the clinical system concurrently cultivates a research platform rich in breadth (eg, clinic characteristics) and depth (eg, unique patient- and caregiver-reporting patterns); and (3) to demonstrate the utility of capturing patient-caregiver dyad data in real time, with dynamic outcomes tracking that informs clinical decisions and delivery of treatments. Technical, financial, and systems-based considerations of Peds-CHOIR are discussed. Cross-sectional retrospective data from patients with chronic pain (N = 352; range, 8-17 years; mean, 13.9 years) and their caregivers are reported, including National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) domains (mobility, pain interference, fatigue, peer relations, anxiety, and depression) and the Pain Catastrophizing Scale. Consistent with the literature, analyses of initial visits revealed impairments across physical, psychological, and social domains. Patients and caregivers evidenced agreement in observable variables (mobility); however, caregivers consistently endorsed greater impairment regarding internal experiences (pain interference, fatigue, peer relations, anxiety, and depression) than patients' self-report. A platform like Peds-CHOIR highlights predictors of chronic pain outcomes on a group level and facilitates individually tailored treatment(s). Challenges of implementation and future directions are discussed.
协作健康结果信息注册库儿科版（Peds - CHOIR）是一个免费、开源且灵活的学习型医疗保健系统（LHS），它响应了医学研究所关于开发国家注册库以指导研究和精准疼痛医学的号召。本报告是对Peds - CHOIR首次应用的技术阐述，有三个目标：（1）描述该学习型医疗保健系统的设计与实施过程；（2）强调临床系统如何同时培育一个在广度（如诊所特征）和深度（如独特的患者及照顾者报告模式）上都丰富的研究平台；（3）展示实时捕捉患者 - 照顾者二元数据的效用，以及动态结果跟踪如何为临床决策和治疗提供信息。文中讨论了Peds - CHOIR在技术、财务和系统方面的考量。报告了来自慢性疼痛患者（N = 352；年龄范围8 - 17岁；平均年龄13.9岁）及其照顾者的横断面回顾性数据，包括美国国立卫生研究院患者报告结果测量信息系统（PROMIS）领域（活动能力、疼痛干扰、疲劳、同伴关系、焦虑和抑郁）以及疼痛灾难化量表。与文献一致，对初次就诊的分析显示在身体、心理和社会领域均存在损伤。患者和照顾者在可观察变量（活动能力）上表现出一致性；然而，照顾者始终认可在内部体验（疼痛干扰、疲劳、同伴关系、焦虑和抑郁）方面比患者自我报告的损伤程度更大。像Peds - CHOIR这样的平台在群体层面突出了慢性疼痛结果的预测因素，并有助于进行个体化定制治疗。文中讨论了实施过程中的挑战和未来方向。
