Northern Regional Bleeding Disorders Center, Traverse City, MI, USA.
Haemophilia. 2011 Jul;17(4):612-9. doi: 10.1111/j.1365-2516.2010.02479.x. Epub 2011 Feb 15.
A descriptive survey was conducted in Region V-E of the United States to bridge the gap in available information on pain issues in the bleeding disorders population. The aim of this study was to a) determine language used by patients to describe and differentiate acute and persistent pain, b) describe pharmacological and non-pharmacological strategies utilized to control pain, c) determine the providers of pain management to this population and d) evaluate quality of life incorporating the SF-36 QOL tool. A total of 202 surveys were returned. For the purposes of this paper, it was decided to analyse only haemophilia data (n = 114). Average persistent daily pain levels were 5/10 (P < 0.001). The three most common word descriptors for both acute and persistent pain were the same - achy, throbbing and tender; the most utilized pain medications were NSAIDs and acetaminophen. Factor replacement was used for what respondents described as acute pain management 79% of the time and for persistent pain management 38% of the time. Participants described acute and persistent pain with the same pain descriptors leading to the conclusion that patients have difficulty distinguishing between acute and persistent pain. This lack of differentiation was further displayed by the use of factor replacement to treat persistent pain associated with arthritic discomfort (38%) which would be viewed as inappropriate, as well as lack of factor replacement use by 21% of respondents who identified pain as from an acute bleed. Opportunities exist to improve pain management through patient and provider-directed educational programs.
a) 确定患者用于描述和区分急性和持续性疼痛的语言；b) 描述用于控制疼痛的药理学和非药理学策略；c) 确定为该人群提供疼痛管理的提供者；d) 通过 SF-36 QOL 工具评估生活质量。共收回 202 份调查问卷。由于本研究的目的，仅分析了血友病数据(n=114)。持续性每日疼痛平均水平为 5/10( P < 0.001)。急性和持续性疼痛的三个最常见的单词描述符是相同的——酸痛、悸动和压痛；最常用的止痛药是非甾体抗炎药和对乙酰氨基酚。受访者表示，因子替代疗法用于治疗急性疼痛的时间为 79%，用于治疗持续性疼痛的时间为 38%。参与者用相同的疼痛描述符来描述急性和持续性疼痛，这表明患者难以区分急性和持续性疼痛。这种区分不足还表现在，因子替代疗法用于治疗与关节炎不适相关的持续性疼痛（38%），这被认为是不恰当的，以及 21%的受访者认为疼痛是由急性出血引起的，但没有使用因子替代疗法。通过患者和提供者指导的教育计划，有机会改善疼痛管理。
