van Genderen F R, Fischer K, Heijnen L, de Kleijn P, van den Berg H M, Helders P J M, van Meeteren N L U
Van Creveldkliniek; Department Neurology and Neurosurgery, Section Rehabilitation Medicine, Rudolf Magnus Institute of Neuroscience, Utrecht, the Netherlands.
Haemophilia. 2006 Mar;12(2):147-53. doi: 10.1111/j.1365-2516.2006.01203.x.
Patients with severe haemophilia often experience pain caused by haemophilic arthropathy, and it is known that pain acts as a predictor of disability. The role of pain in functional limitations in these patients, however, has not been systematically investigated. The aim of this study was to describe pain as experienced by patients with haemophilia and to address the role of pain in subsequent functional limitations. Seventy-eight adult patients (18-70 years) with severe haemophilia completed one questionnaire on pain and one on self-perceived functional abilities. Two-thirds of the patients suffered from more than one painful joint, the ankle being mentioned most frequently (n=43). Analgesics were used by 36% of the patients indicating having pain. Six of 10 most frequently mentioned pain descriptors were of evaluative nature. Evaluative qualities of pain were associated with pain intensity, which in turn was associated with the impact of pain on daily life. Pain outcomes, after adjusting for age and treatment modality, explained 3-22% of the variance in self-perceived functional abilities. Data on radiological joint damage (Pettersson scores) were retrieved for a subgroup of 28 younger patients on prophylaxis and no significant correlations with pain parameters were found. Over two-thirds of the patients with severe haemophilia had one or more painful joints. Pain plays a small, but significant role in functional limitations. In the identified subgroup, arthropathy, as measured by the Pettersson score, seemed to have no role in pain experience. Promoting analgesic use might decrease the impact of pain on functional limitations.
重度血友病患者常因血友病性关节病而疼痛,且已知疼痛是残疾的一个预测指标。然而,疼痛在这些患者功能受限方面所起的作用尚未得到系统研究。本研究的目的是描述血友病患者所经历的疼痛,并探讨疼痛在随后功能受限中所起的作用。78名年龄在18至70岁之间的重度血友病成年患者完成了一份关于疼痛的问卷和一份关于自我感知功能能力的问卷。三分之二的患者有不止一个疼痛关节,其中踝关节被提及的频率最高(n = 43)。36% 表示有疼痛的患者使用了镇痛药。10个最常被提及的疼痛描述词中有6个具有评价性质。疼痛的评价性质与疼痛强度相关,而疼痛强度又与疼痛对日常生活的影响相关。在对年龄和治疗方式进行调整后,疼痛结果解释了自我感知功能能力差异的3% 至22%。为28名接受预防治疗的年轻患者亚组检索了关节放射学损伤数据(Pettersson评分),未发现与疼痛参数有显著相关性。超过三分之二的重度血友病患者有一个或多个疼痛关节。疼痛在功能受限中起的作用虽小,但很显著。在已确定的亚组中,以Pettersson评分衡量的关节病似乎在疼痛体验中不起作用。促进镇痛药的使用可能会减少疼痛对功能受限的影响。