University of Colorado School of Medicine, Aurora, CO, USA.
Wake Forest School of Medicine, Winston-Salem, NC, USA.
Eur J Haematol. 2018 Apr;100 Suppl 1:5-13. doi: 10.1111/ejh.13027.
Pain, functional impairment, anxiety, and depression associated with joint disease may affect health-related quality of life (HRQoL) in people with hemophilia.
To report detailed patient-reported outcomes (PRO) assessments related to HRQoL in participants in the Pain, Functional Impairment, and Quality of Life (P-FiQ) study.
Pain and HRQoL were assessed via PRO instruments in US adult males with hemophilia A or B and a history of joint pain or bleeding. PRO instruments included EQ-5D-5L with visual analog scale, Brief Pain Inventory v2 Short Form, SF-36v2, and Hemophilia Activities List. Instrument domain and item responses were described.
Responses were collected from 381 adult males with a median age of 34 years. Pain was observed across instruments and affected daily activities and quality of life. Respondents reported functional impairment that limited the kind of work and activities they participated in, with activities involving the lower extremities being most affected. A high prevalence of mental health disorders was identified across instruments.
Pain and HRQoL were evaluated using multiple PRO instruments, which vary in timescales of assessment and levels of detail. More consistent clinical assessments and patient dialog regarding pain and aspects of HRQoL may help drive improved outcomes.
与关节疾病相关的疼痛、功能障碍、焦虑和抑郁可能会影响血友病患者的健康相关生活质量（HRQoL）。
报告与 Pain，Functional Impairment，and Quality of Life（P-FiQ）研究中参与者的 HRQoL 相关的详细患者报告结局（PRO）评估。
通过 PRO 工具评估美国成年男性血友病 A 或 B 患者的疼痛和 HRQoL，这些患者有过关节疼痛或出血史。PRO 工具包括 EQ-5D-5L 与视觉模拟量表、简短疼痛量表 v2 短表、SF-36v2 和血友病活动清单。描述了仪器域和项目的反应。
从 381 名中位年龄为 34 岁的成年男性中收集了回复。疼痛在各种仪器上均有表现，影响日常活动和生活质量。受访者报告存在功能障碍，限制了他们参与的工作和活动类型，下肢活动受影响最大。在各种仪器上都发现了心理健康障碍的高患病率。
使用多种 PRO 工具评估了疼痛和 HRQoL，这些工具在评估时间范围和详细程度上有所不同。更一致的临床评估和患者对疼痛和 HRQoL 方面的对话可能有助于改善结果。
