Brandon Timothy G, Becker Brandon D, Bevans Katherine B, Weiss Pamela F
Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
University of Pennsylvania Perelman School of Medicine, Philadelphia.
Arthritis Care Res (Hoboken). 2017 Mar;69(3):393-402. doi: 10.1002/acr.22937.
To evaluate the precision and construct validity of pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) instruments in a population of juvenile idiopathic arthritis (JIA) patients and parent proxies.
A convenience sample of JIA patients and parents of JIA patients completed PROMIS instruments for 8 domains: anger, anxiety, depressive symptoms, fatigue, mobility, pain interference, peer relationships, and upper-extremity function. Short form and computerized adaptive test (CAT) scores were derived from item bank responses. Raw scores were translated to standardized T scores with corresponding SEs. Discrimination between inactive versus active disease was evaluated as an indicator of each measure's construct validity. SEs were plotted to evaluate each instrument's relative precision. Patient-parent concordance was assessed using intraclass correlations (ICCs).
A total of 228 patients and 223 parents participated, providing 71-78 responses per domain. Patient- and parent-reported anger, fatigue, mobility, and pain interference scores significantly differed between those with inactive and active disease. Anxiety, depressive symptoms, and peer relationships differed by disease activity levels for parent-report only. Short forms and CATs provided comparable reliability to the full item banks across the full range of each outcome. Patient-parent agreement ranged from ICC 0.3 to 0.8. CATs did not reduce the number of items for any domain compared to the short form.
Precision and discriminatory abilities of PROMIS instruments depend on health domain and report type (self-report versus parent proxy-report) for children with JIA. Varying levels of patient-parent concordance reinforces the importance of considering both perspectives in comprehensive health outcomes assessments.
评估儿童患者报告结果测量信息系统（PROMIS）工具在青少年特发性关节炎（JIA）患者及家长代理人群中的精度和结构效度。
选取JIA患者及其家长作为便利样本，完成针对8个领域的PROMIS工具测评：愤怒、焦虑、抑郁症状、疲劳、活动能力、疼痛干扰、同伴关系和上肢功能。简表和计算机自适应测试（CAT）分数由题库回答得出。原始分数被转换为具有相应标准误的标准化T分数。评估非活动期与活动期疾病之间的差异，作为各测量指标结构效度的一个指标。绘制标准误以评估每个工具的相对精度。使用组内相关系数（ICC）评估患者与家长的一致性。
共有228名患者和223名家长参与，每个领域提供了71 - 78份回答。患者和家长报告的愤怒、疲劳、活动能力和疼痛干扰分数在非活动期和活动期疾病患者之间存在显著差异。焦虑、抑郁症状和同伴关系仅在家长报告中因疾病活动水平而异。简表和CAT在每个结果的全范围内提供了与完整题库相当的可靠性。患者与家长的一致性范围为ICC 0.3至0.8。与简表相比，CAT在任何领域都没有减少项目数量。
PROMIS工具的精度和区分能力取决于JIA患儿的健康领域和报告类型（自我报告与家长代理报告）。不同水平的患者与家长一致性强化了在综合健康结果评估中考虑双方观点的重要性。
