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成年血友病患者的失业与治疗之间的关联。

The association between unemployment and treatment among adults with hemophilia.

作者信息

Qvigstad Christian, Sørensen Lars Q, Tjønnfjord Geir E, Holme Pål André

机构信息

Department of Haematology, Oslo University Hospital Rikshospitalet, Rikshospitalet, Norway.

Research Institute of Internal Medicine, Oslo University Hospital Rikshospitalet, Rikshospitalet, Norway.

出版信息

Res Pract Thromb Haemost. 2024 Jul 14;8(5):102514. doi: 10.1016/j.rpth.2024.102514. eCollection 2024 Jul.

Abstract

BACKGROUND

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.

OBJECTIVES

To explore associations between unemployment due to disability and treatment while adjusting for known risk factors for unemployment.

METHODS

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.

RESULTS

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;  < .01), severe hemophilia (OR, 10.81;  < .01), current smoker (OR, 2.53;  < .01), and psychiatric disorder (OR, 4.18;  = .02) were associated with increased odds of unemployment due to disability. In contrast, prophylactic treatment (OR, 0.44;  = .01) was associated with decreased odds.

CONCLUSION

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.

摘要

背景

血友病患者经常经历疼痛,并患有与其出血性疾病相关的合并症。因此,因残疾而失业在血友病患者中很普遍。

目的

在调整已知的失业风险因素的同时,探讨因残疾而失业与治疗之间的关联。

方法

来自15个欧洲国家的20个血友病中心收集数据,血友病研究中的年龄相关发展与合并症研究招募了785名40岁及以上的甲型或乙型血友病患者。一份全面的电子病例报告表包括与患者特征、人口统计学信息、过去和当前治疗方案以及病史相关的项目,包括合并症的终生病史。使用描述性统计和逻辑回归模型分析了血友病研究中年龄相关发展与合并症研究的基线数据。

结果

785名年龄在40至88岁(中位数为53岁)的参与者中,有756人的就业状况可用。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患者。该分析包括424名参与者。使用多变量逻辑回归,我们发现年龄(优势比[OR],1.07;P <.01)、重度血友病(OR,10.81;P <.01)、当前吸烟者(OR,2.53;P <.01)和精神疾病(OR,4.18;P =.02)与因残疾而失业的几率增加相关。相比之下,预防性治疗(OR,0.44;P =.01)与几率降低相关。

结论

我们的分析表明,通过将凝血因子水平维持在临界阈值(3%-5%)以上,对血友病患者进行预防性治疗有助于避免因残疾而失业。虽然预防成本更高且可能负担较重,但对物质福利和生活质量的益处可能很大。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/84e2/11345527/39d5a4fceca6/gr1.jpg

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