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首页> 外文期刊>Patient Preference and Adherence >Known-group validity of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study
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Known-group validity of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study

机译：患者报告的结局指标和血友病联合健康评分v2.1在美国成人血友病中的已知人群有效性：疼痛，功能障碍和生活质量（P-FiQ）研究的结果

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Background: The Pain, Functional Impairment, and Quality of Life (P-FiQ) study was an observational, cross-sectional assessment of the impact of pain on functional impairment and quality of life in adults with hemophilia in the United States who experience joint pain or bleeding. Objective: To describe known-groups validity of assessment tools used in the P-FiQ study. Patients and methods: Participants completed 5 patient-reported outcome (PRO) instruments (5-level EuroQoL 5-dimensional questionnaire [EQ-5D-5L] with visual analog scale [VAS], Brief Pain Inventory v2 Short Form [BPI], International Physical Activity Questionnaire [IPAQ], Short-Form Health Survey [SF-36v2], and Hemophilia Activities List [HAL]) and underwent a musculoskeletal examination (Hemophilia Joint Health Score [HJHS]) during a routine clinical visit. Results: P-FiQ enrolled 381 adults with hemophilia (median age, 34?years). Participants were predominantly whiteon-Hispanic (69.2%), 75% had congenital hemophilia A, and 70.5% had severe hemophilia. Most (n=310) reported bleeding within the past 6?months (mean [SD] number of bleeds, 7.1 [13.00]). All instruments discriminated between relevant known (site- or self-reported) participant groups. Domains related to pain on EQ-5D-5L, BPI, and SF-36v2 discriminated self-reported pain (acute/chronic/both; P <0.05), domains related to functional impairment on IPAQ, SF-36v2, and HAL discriminated self-reported functional impairment (restricted/unrestricted; P <0.05), and domains related to mental health on the EQ-5D-5L and SF-36v2 discriminated self-reported anxiety/depression (yeso; P <0.01). HJHS ankle and global gait domains and global score discriminated self-reported arthritis/bone/joint problems, percentage of lifetime on prophylaxis, current treatment regimen, and hemophilia severity ( P <0.01); knee and elbow domains discriminated all of these ( P <0.01) except for current treatment regimen. Conclusion: All assessment tools demonstrated known-group validity and may have practical applicability in evaluating adults with hemophilia in clinical and research settings in the United States.
机译：背景：疼痛，功能障碍和生活质量（P-FiQ）研究是一项观察性横断面评估，评估疼痛对经历关节痛的美国血友病患者的功能障碍和生活质量的影响或流血。目的：描述P-FiQ研究中使用的评估工具的已知人群有效性。患者和方法：参与者完成了5例患者报告的结局（PRO）仪器（5级EuroQoL 5维问卷[EQ-5D-5L]，具有视觉模拟量表[VAS]，简短疼痛量表v2简短表格[BPI]，国际体力活动问卷[IPAQ]，简短健康调查[SF-36v2]和血友病活动列表[HAL]），并在常规临床访问期间接受了肌肉骨骼检查（血友病联合健康评分[HJHS]）。结果：P-FiQ招募了381名血友病成人（中位年龄34岁）。参加者主要是白人/非西班牙裔（69.2％），75％患有先天性血友病，70.5％患有严重血友病。大多数（n = 310）报告在过去6个月内有出血（平均[SD]出血数量为7.1 [13.00]）。在相关的已知（现场或自我报告）参与者组之间区分所有工具。与EQ-5D-5L，BPI和SF-36v2上的疼痛相关的域可区分自我报告的疼痛（急性/慢性/两者; P <0.05），与IPAQ，SF-36v2和HAL上的功能障碍相关的域可区分自我-报告的功能障碍（受限制/不受限制; P <0.05），以及与EQ-5D-5L和SF-36v2上的心理健康相关的域可区分自我报告的焦虑/抑郁（是/否; P <0.01）。 HJHS脚踝和整体步态域以及整体评分可区分自我报告的关节炎/骨/关节问题，预防的生存期百分比，当前治疗方案和血友病严重程度（P <0.01）;除目前的治疗方案外，膝盖和肘部区域可区分所有这些区域（P <0.01）。结论：在美国，所有评估工具均显示出已知人群的有效性，并且在评估成人血友病中可能具有实际适用性。

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