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使用维生素K拮抗剂的原发性抗磷脂综合征患者的自我感知生活质量

Self-perceived quality of life of primary antiphospholipid syndrome patients using vitamin K antagonist.

作者信息

de Oliveira Vaz Camila, de Moraes Mazetto Fonseca Bruna, Nascimento Silva Vasconcelos Pedro Eduardo, Brito Bastos Larissa, Cursino Maria Aparecida, Coelho França Quintanilha Júlia, Tripiquia Vechiatto Mesquita Gabriela Lisiane, Rosa Dos Santos Ana Paula, Cardoso Jacintho Bruna, Oliveira José Diogo, Annichino-Bizzachi Joyce, Andrade Orsi Fernanda

机构信息

Department of Pharmacology, School of Medical Sciences, University of Campinas, Campinas, SP, Brazil.

School of Medical Sciences, University of Campinas, Campinas, SP, Brazil.

出版信息

Lupus. 2021 Apr;30(5):707-714. doi: 10.1177/0961203321990079. Epub 2021 Jan 28.

Abstract

PURPOSE

Primary antiphospholipid syndrome (PAPS) is a chronic autoimmune disorder clinically characterized by thromboembolic events or obstetric complications. Prolonged anticoagulation therapy with vitamin K antagonists (VKA) is the treatment of choice for PAPS patients with thrombosis. However, the efficacy of VKA therapy depends on laboratory monitoring, dose adjustment, adequate lifestyle and adherence to treatment. Difficulties with VKA therapy can affect patients' self-perceived health related quality of life (HRQOL). This study aims to evaluate PAPS patients' HRQOL, therapy adherence and knowledge of treatment.

METHODS

A general Medical Outcome Study Short Form-36 (SF-36) and the Duke Anticoagulation Satisfaction Scale (DASS) were used to access APS-patients self-perceived HRQOL. Treatment adherence was measured by the Treatment Measure Adhesion (TMA) - oral anticoagulant version instrument, and knowledge of VKA treatment was measured using the MedTake test.

RESULTS

66 PAPS patients using VKA were assessed. 63% of them were female; the mean age was 41.9 years old, approximately 60% had unprovoked venous thrombosis and one third of the patients had recurrent thrombotic events. The most impacted domain of DASS was "psychological impacts" and the factors associated to anticoagulation related poor HRQOL were: female sex, presence of arterial thrombosis and INR lability. Using the SF-36 instrument, PAPS-patients self-perceived HRQOL was poorer than that of the general Brazilian population and was associated with female sex and presence of cardiovascular risk factors.

CONCLUSION

Despite the high adherence to treatment and knowledge of VKA therapy, self-perceived HRQOL is poor in patients with PAPS and is mainly affected by VKA therapy. Searching for better treatment options is warranted.

摘要

目的

原发性抗磷脂综合征(PAPS)是一种慢性自身免疫性疾病,临床特征为血栓栓塞事件或产科并发症。对于患有血栓形成的PAPS患者,使用维生素K拮抗剂(VKA)进行长期抗凝治疗是首选治疗方法。然而,VKA治疗的疗效取决于实验室监测、剂量调整、适当的生活方式和对治疗的依从性。VKA治疗的困难可能会影响患者自我感知的健康相关生活质量(HRQOL)。本研究旨在评估PAPS患者的HRQOL、治疗依从性和治疗知识。

方法

使用一般医疗结果研究简表-36(SF-36)和杜克抗凝满意度量表(DASS)来评估APS患者自我感知的HRQOL。治疗依从性通过治疗措施依从性(TMA)-口服抗凝剂版本工具进行测量,VKA治疗知识通过MedTake测试进行测量。

结果

对66名使用VKA的PAPS患者进行了评估。其中63%为女性;平均年龄为41.9岁,约60%有无诱因静脉血栓形成,三分之一的患者有复发性血栓形成事件。DASS中受影响最大的领域是“心理影响”,与抗凝相关的HRQOL差相关的因素是:女性、动脉血栓形成的存在和INR不稳定。使用SF-36工具,PAPS患者自我感知的HRQOL比巴西普通人群差,并且与女性和心血管危险因素的存在相关。

结论

尽管对治疗的依从性高且对VKA治疗有一定了解,但PAPS患者自我感知的HRQOL较差,主要受VKA治疗影响。有必要寻找更好的治疗选择。

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