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Abstract：
OBJECTIVE: This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children\'s functioning.
METHODS: Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools\' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022.
RESULTS: Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health.
CONCLUSIONS: This paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities.
METHODS: Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools\' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022.
RESULTS: Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health.
CONCLUSIONS: This paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities.
摘要：
目的：本研究描述了更新脑瘫（CP）常见数据元素（CDEs）的过程，特别是识别工具，捕捉慢性疼痛对儿童功能的影响。
方法：通过美国脑瘫和发育医学学会与国家神经疾病和中风研究所（NINDS）之间的合作，CPCDE被开发为神经科学临床研究的数据标准.NINDSCPCDEs1.0版中慢性疼痛的代表性不足。跨学科专业团队采用了多步骤方法。遵循适应的CP慢性疼痛工具评级系统，以及对心理测量特性的回顾，临床效用，并遵守纳入/排除标准，2022年5月,我们在网上发布了一套推荐的疼痛工具,以征询外部公众意见.
结果：15种慢性疼痛工具符合纳入标准，代表国际功能分类所有组成部分的结构，残疾与健康。
结论：本文描述了针对儿科人群的第一个疾病特异性疼痛CDE。提出的一组慢性疼痛工具补充并增强了现有儿科CPCDE的适用性。新型CPCDE疼痛工具协调了慢性疼痛的评估，不仅解决慢性疼痛的强度，还有在日常活动中体验它的功能影响。
方法：通过美国脑瘫和发育医学学会与国家神经疾病和中风研究所（NINDS）之间的合作，CPCDE被开发为神经科学临床研究的数据标准.NINDSCPCDEs1.0版中慢性疼痛的代表性不足。跨学科专业团队采用了多步骤方法。遵循适应的CP慢性疼痛工具评级系统，以及对心理测量特性的回顾，临床效用，并遵守纳入/排除标准，2022年5月,我们在网上发布了一套推荐的疼痛工具,以征询外部公众意见.
结果：15种慢性疼痛工具符合纳入标准，代表国际功能分类所有组成部分的结构，残疾与健康。
结论：本文描述了针对儿科人群的第一个疾病特异性疼痛CDE。提出的一组慢性疼痛工具补充并增强了现有儿科CPCDE的适用性。新型CPCDE疼痛工具协调了慢性疼痛的评估，不仅解决慢性疼痛的强度，还有在日常活动中体验它的功能影响。
