Abstract：
BACKGROUND: Pain is a significant burden for children with neurodevelopmental disabilities but is difficult for clinicians to identify. No pain assessment tools for children with neurodevelopmental disabilities have been validated for use in pediatric intensive care units. The Individualized Numeric Rating Scale (INRS) is an adapted 0-to-10 rating that includes parents\' input on their child\'s pain indicators.
OBJECTIVE: To evaluate the reliability, validity, and feasibility and acceptability of use of the INRS for assessing pain in critically ill children with neurodevelopmental disabilities.
METHODS: This observational study enrolled critically ill patients with neurodevelopmental disabilities aged 3 to 17 years in 2 pediatric intensive care units at a children\'s hospital using a prospective repeated-measures cohort design. Structured parent interviews were used to populate each patient\'s INRS. Bedside nurses assessed pain using the INRS throughout the study. The research team completed independent INRS ratings using video clips. Participating parents and nurses completed feasibility and acceptability surveys. Psychometric properties of the INRS and survey responses were evaluated with appropriate statistical methods.
RESULTS: For 481 paired INRS pain ratings in 34 patients, interrater reliability between nurse and research team ratings was moderate (weighted κ = 0.56). Parents said that creating the INRS was easy, made them feel more involved in care, and helped them communicate with nurses.
CONCLUSIONS: The INRS has adequate measurement properties for assessing pain in critically ill children with neurodevelopmental disabilities. It furthers goals of patient- and family-centered care but may have implementation barriers.
OBJECTIVE: To evaluate the reliability, validity, and feasibility and acceptability of use of the INRS for assessing pain in critically ill children with neurodevelopmental disabilities.
METHODS: This observational study enrolled critically ill patients with neurodevelopmental disabilities aged 3 to 17 years in 2 pediatric intensive care units at a children\'s hospital using a prospective repeated-measures cohort design. Structured parent interviews were used to populate each patient\'s INRS. Bedside nurses assessed pain using the INRS throughout the study. The research team completed independent INRS ratings using video clips. Participating parents and nurses completed feasibility and acceptability surveys. Psychometric properties of the INRS and survey responses were evaluated with appropriate statistical methods.
RESULTS: For 481 paired INRS pain ratings in 34 patients, interrater reliability between nurse and research team ratings was moderate (weighted κ = 0.56). Parents said that creating the INRS was easy, made them feel more involved in care, and helped them communicate with nurses.
CONCLUSIONS: The INRS has adequate measurement properties for assessing pain in critically ill children with neurodevelopmental disabilities. It furthers goals of patient- and family-centered care but may have implementation barriers.
摘要：
背景：疼痛是神经发育障碍儿童的重要负担，但临床医生很难识别。尚未验证神经发育障碍儿童的疼痛评估工具可用于儿科重症监护病房。个性化数字评定量表（INRS）是经过调整的0到10等级，其中包括父母对孩子疼痛指标的输入。
目的：为了评估可靠性，有效性，以及使用INRS评估神经发育障碍危重患儿疼痛的可行性和可接受性。
方法：这项观察性研究采用前瞻性重复措施队列设计，在一家儿童医院的2个儿科重症监护病房招募了3至17岁的神经发育障碍危重患者。结构化家长访谈用于填充每位患者的INRS。床边护士在整个研究中使用INRS评估疼痛。研究小组使用视频剪辑完成了独立的INRS评级。参与的父母和护士完成了可行性和可接受性调查。使用适当的统计方法评估了INRS的心理测量特性和调查响应。
结果：对34例患者的481个配对INRS疼痛评分，护士和研究团队评分之间的评分者间可靠性中等(加权κ=0.56).父母说创建INRS很容易，让他们感觉更多地参与到护理中，帮助他们与护士沟通。
结论：INRS具有评估神经发育障碍危重患儿疼痛的足够测量特性。它进一步推进了以患者和家庭为中心的护理目标，但可能存在实施障碍。
目的：为了评估可靠性，有效性，以及使用INRS评估神经发育障碍危重患儿疼痛的可行性和可接受性。
方法：这项观察性研究采用前瞻性重复措施队列设计，在一家儿童医院的2个儿科重症监护病房招募了3至17岁的神经发育障碍危重患者。结构化家长访谈用于填充每位患者的INRS。床边护士在整个研究中使用INRS评估疼痛。研究小组使用视频剪辑完成了独立的INRS评级。参与的父母和护士完成了可行性和可接受性调查。使用适当的统计方法评估了INRS的心理测量特性和调查响应。
结果：对34例患者的481个配对INRS疼痛评分，护士和研究团队评分之间的评分者间可靠性中等(加权κ=0.56).父母说创建INRS很容易，让他们感觉更多地参与到护理中，帮助他们与护士沟通。
结论：INRS具有评估神经发育障碍危重患儿疼痛的足够测量特性。它进一步推进了以患者和家庭为中心的护理目标，但可能存在实施障碍。
