Wang Michael, Batt Katharine, Kessler Craig, Neff Anne, Iyer Neeraj N, Cooper David L, Kempton Christine L
Hemophilia and Thrombosis Center, University of Colorado School of Medicine, Aurora, CO.
Hematology and Oncology, Wake Forest School of Medicine, Winston-Salem, NC.
Patient Prefer Adherence. 2017 Oct 25;11:1831-1839. doi: 10.2147/PPA.S141391. eCollection 2017.
The Pain, Functional Impairment, and Quality of Life study was an observational, cross-sectional assessment of the impact of pain on functional impairment and quality of life in adult people with hemophilia (PWH) of any severity in the USA who experience joint pain and/or bleeding.
To assess internal consistency (IC) and item-total correlation (ITC) of assessment tools used in the Pain, Functional Impairment, and Quality of Life study.
Participants completed 5 patient-reported outcome instruments (EQ-5D-5L with visual analog scale, Brief Pain Inventory v2 Short Form [BPI], International Physical Activity Questionnaire [IPAQ], Short Form 36 Health Survey v2 [SF-36v2], and Hemophilia Activities List [HAL]) and underwent an optional physiotherapist-administered musculoskeletal exam (Hemophilia Joint Health Score v2.1) during routine visits. Reliability assessment included IC and ITC of each instrument.
A total of 381 adult PWH (median age, 34 years) were enrolled. Participants were predominantly white/non-Hispanic (69.2%); 75% had congenital hemophilia A, and 70.5% had severe hemophilia. A total of 310 subjects reported bleeding within the past 6 months (mean [SD] number of bleeds, 7.1 [13.00]). IC was generally high across the instruments employed (Cronbach's alpha 0.79-0.98) with the exception of HAL use of transportation (0.58) and IPAQ total physical activity (0.51). ITC was high (Pearson's product-moment correlation coefficient >0.20) for all items except the "vigorous intensity activities" item of IPAQ, which was applicable to less than one-third of participants. The ITCs were generally highest in domains/scores that measured the functional consequences of hemophilic arthropathy on mobility and pain.
The demonstrated reliability (IC/ITC) of the patient-reported outcome instruments and Hemophilia Joint Health Score v2.1 support a role for these instruments in evaluating adult PWH in US clinical and research settings.
疼痛、功能障碍和生活质量研究是一项观察性横断面评估，旨在研究疼痛对美国任何严重程度的血友病成年患者（PWH）功能障碍和生活质量的影响，这些患者经历关节疼痛和/或出血。
评估疼痛、功能障碍和生活质量研究中使用的评估工具的内部一致性（IC）和项目与总分相关性（ITC）。
参与者在常规就诊期间完成了5份患者报告结局量表（带有视觉模拟量表的EQ-5D-5L、简明疼痛量表v2简表[BPI]、国际体力活动问卷[IPAQ]、健康调查简表36 v2[SF-36v2]和血友病活动清单[HAL]），并接受了由物理治疗师进行的可选肌肉骨骼检查（血友病关节健康评分v2.1）。可靠性评估包括每个量表的IC和ITC。
共招募了381名成年PWH（中位年龄34岁）。参与者主要为白人/非西班牙裔（69.2%）；75%患有先天性血友病A，70.5%患有严重血友病。共有310名受试者报告在过去6个月内有出血（平均[标准差]出血次数为7.1[13.00]）。除HAL的交通使用情况（0.58）和IPAQ的总体力活动情况（0.51）外，所使用量表的IC总体较高（克朗巴哈系数α为0.79 - 0.98）。除IPAQ中“剧烈强度活动”项目外，所有项目的ITC均较高（皮尔逊积差相关系数>0.20），该项目适用于不到三分之一的参与者。ITC在测量血友病性关节病对活动能力和疼痛的功能后果的领域/评分中通常最高。
患者报告结局量表和血友病关节健康评分v2.1所显示的可靠性（IC/ITC）支持这些量表在美国临床和研究环境中评估成年PWH时发挥作用。
