确立患者报告结果测量信息系统（PROMIS）中儿童慢性肾病和克罗恩病患者疼痛干扰、疲劳、睡眠障碍及睡眠相关损伤测量指标的内容效度。
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.
作者信息
Forrest Christopher B, Forrest Kathryn D, Clegg Jennifer L, de la Motte Anna, Amaral Sandra, Grossman Andrew B, Furth Susan L
机构信息
Applied Clinical Research Center, Department of Pediatrics, Children's Hospital of Philadelphia, 2716 South St, Suite 11-473, Philadelphia, PA, 19146, USA.
Division of Pediatric Nephrology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, USA.
出版信息
J Patient Rep Outcomes. 2020 Feb 12;4(1):11. doi: 10.1186/s41687-020-0178-2.
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.
背景
患者报告结果测量信息系统（PROMIS）儿科患者报告结局测量指标是针对普通儿童群体开发的，其内容效度在慢性病儿童中尚未得到确立。本研究旨在评估PROMIS儿科疼痛干扰和疲劳测量指标在8至17岁克罗恩病儿童中的内容效度，以及PROMIS儿科疲劳、睡眠障碍和睡眠相关损害测量指标在8至17岁慢性肾病儿童中的内容效度。
方法
我们对受克罗恩病和慢性肾病影响的个体进行了半结构化访谈。进行这些访谈是为了了解儿童在PROMIS相关结局方面的实际生活经历。我们使用演绎性内容分析法，将参与者关于其症状及对日常生活影响的报告与PROMIS测量指标的现有概念框架进行对比，每个概念框架的开发都有普通儿童群体的参与。
结果
平均而言，我们从克罗恩病参与者（n = 37）中引出了平均7个疼痛干扰概念和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个睡眠相关损害概念。在对四项PROMIS测量指标进行了16至19次访谈后达到了概念饱和。患有这两种慢性健康状况的儿童报告的实际生活经历的广度和类型与从普通人群中抽取的开发样本中的儿童相同。
结论
该研究支持了多项PROMIS儿科测量指标在克罗恩病和慢性肾病儿童中的内容效度。这些发现提供了证据，表明作为普遍相关的患者报告结局而开发的PROMIS儿科测量指标可能更广泛地适用于慢性病儿童。
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