Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn's disease
Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn's disease
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DOI：
10.1186/s41687-020-0178-2
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发表时间：
2020-02-12
影响因子：
2.7
通讯作者：
Furth, Susan L.
中科院分区：
文献类型：
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作者：
Forrest, Christopher B.;Forrest, Kathryn D.;Furth, Susan L.
PROMIS儿童患者报告的结局指标是在普通人群的儿童中开发的，其内容效度尚未在患有慢性疾病的儿童中建立。本研究旨在评估8-17岁克罗恩病儿童的PROMIS儿童疼痛干扰和疲劳量表以及8-17岁慢性肾脏疾病儿童的PROMIS儿童疲劳、睡眠障碍和睡眠相关损害量表的内容效度。方法对克罗恩病和慢性肾脏疾病患者进行半结构化访谈。访谈是为了引出儿童对PROMIS结果感兴趣的生活经历。我们使用演绎内容分析将参与者的症状报告和对日常生活的影响与PROMIS措施的现有概念框架进行对比，每个概念框架都是根据普通人群中儿童的意见制定的。结果平均而言，我们从克罗恩病参与者（n = 37）中引出了7个疼痛干扰和7个疲劳概念，而慢性肾病参与者（n = 26）提供了9个疲劳概念，4个睡眠障碍概念和7个睡眠相关障碍概念。在对四种PROMIS措施进行了16-19次访谈后，概念饱和达到了。患有这两种慢性健康状况的儿童报告的生活经历的广度和类型与从一般人群中抽取的发展样本的儿童相同。结论本研究支持几种PROMIS儿科措施对克罗恩病和慢性肾脏疾病儿童的内容效度。这些发现提供了证据，证明作为普遍相关的患者报告结果而开发的PROMIS儿科措施可能更广泛地适用于患有慢性疾病的儿童。
Background PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was done to evaluate the content validity of the PROMIS Pediatric Pain Interference and Fatigue measures in children 8-17 years-old with Crohn's disease and the PROMIS Pediatric Fatigue, Sleep Disturbance, and Sleep-related Impairment measures for children 8-17 years-old with chronic kidney disease. Methods We conducted semi-structured interviews with individuals affected by Crohn's disease and chronic kidney disease. The interviews were done to elicit children's lived experiences of the PROMIS outcomes of interest. We used deductive content analysis to contrast the participants' reports of their symptoms and impacts on daily life with existing conceptual frameworks for the PROMIS measures, each of which was developed with input from children in the general population. Results On average, we elicited an average of 7 pain interference and 7 fatigue concepts from Crohn's disease participants (n = 37), while chronic kidney disease participants (n = 26) provided 9 concepts for fatigue, 4 for sleep disturbance, and 7 for sleep-related impairment. Concept saturation was achieved after 16-19 interviews across the four PROMIS measures. Children with these two chronic health conditions reported the same breadth and types of lived experiences as children from the development samples drawn from the general population. Conclusion The study supports the content validity of several PROMIS Pediatric measures for children with Crohn's disease and chronic kidney disease. These findings provide evidence that PROMIS Pediatric measures, developed as universally relevant patient-reported outcomes, may be more broadly applicable to children with chronic disease.