The effects of joint disease, inhibitors and other complications on health-related quality of life among males with severe haemophilia A in the United States.
The effects of joint disease, inhibitors and other complications on health-related quality of life among males with severe haemophilia A in the United States.
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DOI：
10.1111/hae.13275
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发表时间：
2017-07
期刊：
影响因子：
--
通讯作者：
Hemophilia Treatment Centers Network
中科院分区：
文献类型：
--
作者：
Soucie JM;Grosse SD;Siddiqi AE;Byams V;Thierry J;Zack MM;Shapiro A;Duncan N;Hemophilia Treatment Centers Network
血友病患者的健康相关生活质量（HRQoL）降低。关于HRQoL如何随血友病并发症（如抑制剂和关节疾病）而变化，我们知之甚少。需要对基于偏好的HRQoL措施进行估计，以模拟预防策略的成本效益。我们研究了一个全国性样本的严重血友病A患者的特征与两个基于偏好的HRQoL指标的相关性。我们分析了2005 - 2011年在美国135家血友病治疗中心接受治疗的1859例≥14岁重度血友病A男性患者的欧洲五维生活质量量表（EQ-5D）和简明6维健康量表（SF-6D）评分转换的效用权重。双变量和回归分析检查了HRQoL与抑制物状态、超重/肥胖、出血次数、病毒感染、肝脏和关节疾病指标以及首次HRQoL测量时严重出血的年龄组特异性相关性。使用SF-6D和EQ-5D的总体平均HRQoL效用权重值分别为0.71和0.78。在双变量分析中，除超重/肥胖外，所有研究的患者特征均与HRQoL显著相关。在多变量分析中，只有关节疾病与HRQoL指标和所有年龄组的效用权重显著相关。在调整关节疾病和其他变量后，抑制剂的存在与标准化评估工具的HRQoL评分无显著相关性。血友病的临床显著并发症，尤其是关节疾病，与HRQoL密切相关，应在血友病患者基于偏好的健康效用研究中考虑。
Health-related quality of life (HRQoL) is reduced among persons with haemophilia. Little is known about how HRQoL varies with complications of haemophilia such as inhibitors and joint disease. Estimates of preference-based HRQoL measures are needed to model the cost-effectiveness of prevention strategies. We examined the characteristics of a national sample of persons with severe haemophilia A for associations with two preference-based measures of HRQoL. We analysed utility weights converted from EuroQol 5 Dimensions (EQ-5D) and the Short Form 6 Dimensions (SF-6D) scores from 1859 males aged ≥14 years with severe haemophilia A treated at 135 US haemophilia treatment centres in 20052011. Bivariate and regression analyses examined age-group-specific associations of HRQoL with inhibitor status, overweight/obesity, number of bleeds, viral infections, indicators of liver and joint disease, and severe bleeding at the time of the first HRQoL measurement. Overall mean HRQoL utility weight values were 0.71 using the SF-6D and 0.78 using the EQ-5D. All studied patient characteristics except for overweight/obesity were significantly associated with HRQoL in bivariate analyses. In a multivariate analysis, only joint disease was significantly associated with utility weights from both HRQoL measures and across all age groups. After adjustment for joint disease and other variables, the presence of an inhibitor was not significantly associated with HRQoL scores from either of the standardized assessment tools. Clinically significant complications of haemophilia, especially joint disease, are strongly associated with HRQoL and should be accounted for in studies of preference-based health utilities for people with haemophilia.
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影响因子：
3.9
作者：
Noone, D.;O'Mahony, B.;Prihodova, L.
通讯作者：
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影响因子：
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作者：
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作者：
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