■血友病患者经常经历疼痛,并患有与出血性疾病相关的合并症。因此,残疾导致的失业在血友病患者中很普遍。
■探索因残疾而失业与治疗之间的关联,同时调整已知的失业风险因素。
■收集来自15个欧洲国家的20个血友病中心的数据,血友病的年龄相关性发展和合并症研究招募了785名40岁及以上血友病A或B的参与者。一份全面的电子病例报告表包括与患者特征相关的项目,人口统计信息,过去和现在的治疗方案,和病史,包括一生的合并症史.使用描述性统计和逻辑回归模型分析血友病研究中年龄相关发展和合并症的基线数据。
■在785名40至88岁的参与者中,有756人获得了就业状况(中位数,53年)。我们使用回归分析比较了完全就业的血友病患者和因残疾而失业的人。这项分析包括424名参与者。使用多变量逻辑回归,我们发现年龄(赔率比[OR],1.07;P<.01),重度血友病(或,10.81;P<.01),当前吸烟者(或,2.53;P<.01),和精神疾病(或,4.18;P=.02)与因残疾而失业的几率增加有关。相比之下,预防性治疗(OR,0.44;P=0.01)与降低的几率相关。
■我们的分析表明,通过将因子水平保持在临界阈值(3%-5%)以上,血友病患者的预防性治疗可以帮助避免因残疾而失业。虽然预防成本更高,而且可能很麻烦,对物质福祉和生活质量的好处可能是巨大的。
UNASSIGNED: People with hemophilia often experience pain and suffer from comorbidities related to their bleeding disorder. Consequently,
unemployment due to disability is prevalent among people with hemophilia.
UNASSIGNED: To explore associations between
unemployment due to disability and treatment while adjusting for known risk factors for
unemployment.
UNASSIGNED: Collecting data from 20 hemophilia centers from 15 European countries, the Age-related DeVelopments ANd ComorbiditiEs in hemophilia study recruited 785 participants aged 40 years and over with hemophilia A or B. A comprehensive electronic case report form included items related to patient characteristics, demographic information, past and current treatment regimens, and medical history, including a lifelong history of comorbidities. Baseline data from the Age-related DeVelopments ANd ComorbiditiEs in hemophilia study was analyzed using descriptive statistics and logistic regression models.
UNASSIGNED: Employment status was available for 756 of 785 participants aged 40 to 88 years (median, 53 years). We used regression analysis to compare people with hemophilia who were fully employed with those who were unemployed due to disability. This analysis included 424 participants. Using multivariable logistic regression, we found that age (odds ratio [OR], 1.07; P < .01), severe hemophilia (OR, 10.81; P < .01), current smoker (OR, 2.53; P < .01), and psychiatric disorder (OR, 4.18; P = .02) were associated with increased odds of
unemployment due to disability. In contrast, prophylactic treatment (OR, 0.44; P = .01) was associated with decreased odds.
UNASSIGNED: Our analysis suggests that by maintaining factor levels above a critical threshold (3%-5%), prophylactic treatment for people with hemophilia could help avoid
unemployment due to disability. While prophylaxis is more costly and can be burdensome, the benefits to material well-being and quality of life could be substantial.