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成人血友病患者的生活质量——来自瑞典的单中心经验。

Quality of life in adult patients with haemophilia--a single centre experience from Sweden.

机构信息

Lund University, Malmö Centre for Thrombosis and Haemostasis, Malmö, Sweden.

出版信息

Haemophilia. 2012 Jul;18(4):527-31. doi: 10.1111/j.1365-2516.2012.02765.x. Epub 2012 Mar 8.

DOI:10.1111/j.1365-2516.2012.02765.x
PMID:22404485
Abstract

Increased or maintained health and quality of life (HRQoL) are essential goals in health care among patients with a chronic disease. To gain an understanding of HRQoL in patients with haemophilia at the Haemophilia Treatment Centre in Malmö, Sweden, patients seen from 2004-2008 were asked to complete the Short form Health Survey, SF-36, also answering to what extent haemophilia, physically and mentally, interferes with their daily life at their annual check-up. Data were extracted from the UMAS Haemophilia Database. Interference of haemophilia in daily life was estimated using a Visual Analogue Scale. A total of 105/144 haemophilia patients were included in the study (73%); 28 mildly, 21 moderately and 56 severely affected. The median age of patients at study entry was 44.0 years (range 18-84 years). The comparison of SF-36 data of Swedish haemophilia patients with the general Swedish male population yielded no significant differences in age groups 15-24, 25-34 and 65-74 years. Patients in age groups 35-44 years, 45-54 years and 55-64 years were significantly impaired in some of their HRQoL domains. For severely affected patients who filled in SF-36 over a period of 5 years no statistical differences in HRQoL were found. For patients undergoing orthopaedic surgery HRQoL increased in most SF-36 domains. Patients reported in general on the VAS that they feel 'somehow' interfered in their daily life due to haemophilia. The results indicate a need for continuous monitoring of HRQoL to identify an increased need of care in the ageing haemophilia population.

摘要

在慢性病患者的医疗保健中,提高或维持健康和生活质量(HRQoL)是至关重要的目标。为了了解瑞典马尔默血友病治疗中心的血友病患者的 HRQoL,2004-2008 年就诊的患者在年度检查时被要求完成简短健康调查(SF-36),并回答血友病在身体和精神上对他们日常生活的干扰程度。数据从 UMAS 血友病数据库中提取。使用视觉模拟量表估计血友病对日常生活的干扰程度。共有 144 名血友病患者中的 105 名(73%)参与了这项研究,其中 28 名轻度,21 名中度和 56 名重度。研究开始时患者的中位年龄为 44.0 岁(18-84 岁)。将瑞典血友病患者的 SF-36 数据与一般瑞典男性人群进行比较,在 15-24 岁、25-34 岁和 65-74 岁的年龄组中没有发现显著差异。35-44 岁、45-54 岁和 55-64 岁的患者在某些 HRQoL 领域明显受损。在接受了 5 年 SF-36 调查的重度患者中,没有发现 HRQoL 的统计学差异。接受矫形手术的患者在大多数 SF-36 领域的 HRQoL 都有所提高。患者普遍在 VAS 上报告说,由于血友病,他们的日常生活受到了某种程度的干扰。结果表明需要持续监测 HRQoL,以确定老龄化血友病人群中对护理的需求增加。

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