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首页> 外文期刊>Patient Preference and Adherence >Reliability of patient-reported outcome instruments in US adults with hemophilia: the Pain, Functional Impairment and Quality of life (P-FiQ) study
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Reliability of patient-reported outcome instruments in US adults with hemophilia: the Pain, Functional Impairment and Quality of life (P-FiQ) study

机译：患者报告的结果报告在美国成人血友病患者中的可靠性：疼痛，功能障碍和生活质量（P-FiQ）研究

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Background: Hemophilia is marked by frequent joint bleeding, resulting in pain and functional impairment. Objective: This study aimed to assess the reliability of five patient-reported outcome (PRO) instruments in people with hemophilia (PWH) in a non-bleeding state. Methods: Adult male PWH of any severity and inhibitor status, with a history of joint pain or bleeding, completed a pain history and five PRO instruments (EQ-5D-5L, Brief Pain Inventory v2 [BPI], International Physical Activity Questionnaire [IPAQ], Short Form 36 Health Survey v2 [SF-36v2], and Hemophilia Activities List [HAL]) during their routine comprehensive care visit. Patients were approached to complete the PRO instruments again at the end of their visit while in a similar non-bleeding state. Concordance of individual questionnaire items and correlation between domain scores were assessed using intra-class correlation coefficient (ICC). Results: Participants completing the retest (n=164) had a median age of 33.9 years. Median time for completion of the initial survey with PRO instruments was 36.0 minutes and for the five PRO instruments, median retest time was 21.0 minutes. The majority of participants had hemophilia A (74.4%), were white and non-Hispanic (72.6%), and self-reported arthritis/bone/joint problems (61%). Median/mean test-retest concordance was EQ-5D-5L 80.0%/79.1%, BPI 54.5%/58.9%, IPAQ 100%/100%, SF-36v2 77.8%/76.4%, and HAL 77.4%/75.9%. ICCs for test-retest reliability were EQ-5D-5L index 0.890; BPI – severity 0.950; BPI – interference 0.920; IPAQ total activity 0.940; SF-36v2 overall health 0.910; HAL total score 0.970. Conclusion: All five PRO scales showed acceptable test-retest reliability in adult PWH. Therefore, the choice of instrument to be used for research or clinical care should be driven by instrument characteristics other than reliability.
机译：背景：血友病的特征是频繁的关节出血，导致疼痛和功能障碍。目的：本研究旨在评估五种患者报告的结局（PRO）仪器在非出血状态血友病（PWH）中的可靠性。方法：具有任何严重程度和抑制剂状态的成年男性PWH，具有关节痛或出血的病史，完成了疼痛史，并使用了五种PRO仪器（EQ-5D-5L，简短疼痛量表v2 [BPI]，国际身体活动量表[IPAQ] ]，简短的36卫生调查v2 [SF-36v2]和血友病活动列表[HAL]）进行例行的全面护理访问。在就诊结束时，患者处于类似的非出血状态，再次被要求完成PRO仪器。使用类内相关系数（ICC）评估各个问卷项目的一致性和域得分之间的相关性。结果：完成复试的参与者（n = 164）的中位年龄为33.9岁。使用PRO仪器完成首次调查的中位时间为36.0分钟，而对于五台PRO仪器，中位重测时间为21.0分钟。大多数参与者患有A型血友病（74.4％），白人和非西班牙裔（72.6％）以及自我报告的关节炎/骨/关节问题（61％）。中位/均值重测一致性为EQ-5D-5L 80.0％/ 79.1％，BPI 54.5％/ 58.9％，IPAQ 100％/ 100％，SF-36v2 77.8％/ 76.4％和HAL 77.4％/ 75.9％。重测可靠性的ICC为EQ-5D-5L指数0.890; BPI –严重程度为0.950; BPI –干扰0.920; IPAQ总活动0.940; SF-36v2总健康0.910; HAL总分0.970。结论：所有五个PRO量表在成人PWH中均显示出可接受的重测信度。因此，用于研究或临床护理的仪器的选择应由仪器特性而不是可靠性来决定。

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