Development of six PROMIS pediatrics proxy-report item banks
Development of six PROMIS pediatrics proxy-report item banks
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DOI：
10.1186/1477-7525-10-22
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发表时间：
2012-02-22
影响因子：
3.6
通讯作者：
DeWalt, Darren A.
中科院分区：
文献类型：
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作者：
Irwin, Debra E.;Gross, Heather E.;DeWalt, Darren A.
背景：儿童自我报告应被视为衡量儿童患者报告结果（PRO）的标准。然而，当儿童太小、认知受损或病得太重而无法完成PRO仪器时，则需要代理报告。本文介绍了患者报告结果测量信息系统（PROMIS）儿童代理报告题库项目参数的开发过程，包括代理认知访谈和大现场测试调查方法和样本特征。方法：在进行认知访谈前，将PROMIS儿童自我报告项目转化为代理报告项目。这些项目涵盖了六个领域（身体功能、情绪困扰、社会同伴关系、疲劳、疼痛干扰和哮喘影响）。5岁和17岁儿童的照顾者（n = 25）对代理报告项目提供定性反馈，以评估这些项目的任何主要问题。2008年5月至2009年3月，本大规模调查招募8 - 17岁儿童完成自我报告版调查，招募照顾者完成代理报告版调查（n = 1548对）。5 - 7岁儿童的照料者完成代理报告调查（n = 432）。此外，护理人员还完成了其他代理工具，PedsQL (TM) 4.0通用核心量表家长代理报告版本，PedsQL （TM）哮喘模块家长代理报告版本和KIDSCREEN家长代理-52。结果：被调查者对题目内容理解得很好，不需要对题目进行修改，但一些被调查者清楚地指出，在某些题目上代表他们的孩子确定答案是困难的。5-17岁儿童的父母和照顾者参加了大规模的测试。大多数是女性（85%），已婚（70%），白种人（64%），至少受过高中教育（94%）。大约50%的儿童患有慢性疾病，主要是哮喘，在访谈前6个月内得到诊断或治疗。与规范样本相比，PROMIS代理样本在其他代理工具上得分相似或更好。结论：最初的校准数据是由患有各种常见慢性疾病和种族/民族背景的儿童的不同护理人员提供的。PROMIS儿童代理报告项目库包括身体功能（活动能力n = 23；上肢n = 29）、情绪困扰（焦虑n = 15；抑郁症状n = 14；愤怒n = 5）、社会同伴关系（n = 15）、疲劳（n = 34）、疼痛干扰（n = 13）和哮喘影响（n = 17）。
Background: Pediatric self-report should be considered the standard for measuring patient reported outcomes (PRO) among children. However, circumstances exist when the child is too young, cognitively impaired, or too ill to complete a PRO instrument and a proxy-report is needed. This paper describes the development process including the proxy cognitive interviews and large-field-test survey methods and sample characteristics employed to produce item parameters for the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric proxy-report item banks.Methods: The PROMIS pediatric self-report items were converted into proxy-report items before undergoing cognitive interviews. These items covered six domains (physical function, emotional distress, social peer relationships, fatigue, pain interference, and asthma impact). Caregivers (n = 25) of children ages of 5 and 17 years provided qualitative feedback on proxy-report items to assess any major issues with these items. From May 2008 to March 2009, the large-scale survey enrolled children ages 8 17 years to complete the self-report version and caregivers to complete the proxy-report version of the survey (n = 1548 dyads). Caregivers of children ages 5 to 7 years completed the proxy report survey (n = 432). In addition, caregivers completed other proxy instruments, PedsQL (TM) 4.0 Generic Core Scales Parent Proxy-Report version, PedsQL (TM) Asthma Module Parent Proxy-Report version, and KIDSCREEN Parent-Proxy-52.Results: Item content was well understood by proxies and did not require item revisions but some proxies clearly noted that determining an answer on behalf of their child was difficult for some items. Dyads and caregivers of children ages 5-17 years old were enrolled in the large-scale testing. The majority were female (85%), married (70%), Caucasian (64%) and had at least a high school education (94%). Approximately 50% had children with a chronic health condition, primarily asthma, which was diagnosed or treated within 6 months prior to the interview. The PROMIS proxy sample scored similar or better on the other proxy instruments compared to normative samples.Conclusions: The initial calibration data was provided by a diverse set of caregivers of children with a variety of common chronic illnesses and racial/ethnic backgrounds. The PROMIS pediatric proxy-report item banks include physical function (mobility n = 23; upper extremity n = 29), emotional distress (anxiety n = 15; depressive symptoms n = 14; anger n = 5), social peer relationships (n = 15), fatigue (n = 34), pain interference (n = 13), and asthma impact (n = 17).