Trindade Gustavo Cambraia, Viggiano Luíza Gabrielle de Lacerda, Brant Enderson Resende, Lopes Carlos Alexandre de Oliveira, Faria Mateus Lopes de, Ribeiro Pedro Henrique Nery de Sá, Silva Ana Flávia do Carmo, Souza Diana Maria de Resende, Lopes Aline de Freitas, Soares João Marcos Arantes, Pinheiro Melina de Barros
Universidade Federal de São João Del Rei (UFSJ), Divinópolis, MG, Brazil.
Fundação Centro de Hematologia e Hemoterapia do Estado de Minas Gerais, (Hemominas), Divinópolis, MG, Brazil.
Hematol Transfus Cell Ther. 2019 Oct-Dec;41(4):335-341. doi: 10.1016/j.htct.2019.03.010. Epub 2019 Jul 4.
Hemophilia is a coagulopathy caused by a deficiency in coagulation factors VIII (hemophilia A) or IX (hemophilia B). It is a chronic disease and, hence, impairs the quality of life (Qol) of the patients. This study aimed to evaluate the Qol of patients with hemophilia using the WHOQOL-bref and the Haemo-A-Qol instruments, its relation to the clinical condition and its sociodemographic variables.
This is a cross-sectional, epidemiological study, comprising 17 patients with hemophilia, registered at the hemocenter, who met the eligibility criteria. Data were collected using three questionnaires: a semi-structured clinical evaluation form, the WHOQOL-bref and the Haem-A-Qol.
The average age was 30 years old, and most participants declared themselves to be single (58.82%), without children (64.70%) and employed (58.82%). Hemophilia A was observed in 14 patients and the most severe form of the disease was more prevalent (64.70%). The average score of Qol, estimated by the WHOQOL-bref questionnaire was 74.3; being "social relations" the domain with the highest average. The Haem-A-Qol measured an average of 36.2 and the domain with the highest result was "Family Planning".
Hemophilia had a higher negative impact upon the physical, sports and leisure features in the sample subjects. The analysis of the questionnaires did not reveal statistical agreement between them. Based on this, the Haem-A-Qol is considered the most recommended to evaluate the Qol, as it addresses factors more specifically related to the disease. No statistical significance was observed between the scores of Qol, as for the presence of comorbidities, gravity of the hemophilia and positive serology for infections.
血友病是一种由凝血因子 VIII（甲型血友病）或 IX（乙型血友病）缺乏引起的凝血病。它是一种慢性病，因此会损害患者的生活质量（Qol）。本研究旨在使用世界卫生组织生活质量简表（WHOQOL-bref）和血友病 A 生活质量量表（Haemo-A-Qol）评估血友病患者的生活质量，及其与临床状况和社会人口统计学变量的关系。
这是一项横断面流行病学研究，纳入了 17 名在血液中心登记且符合纳入标准的血友病患者。使用三份问卷收集数据：一份半结构化临床评估表、WHOQOL-bref 和 Haemo-A-Qol。
平均年龄为 30 岁，大多数参与者表示单身（58.82%）、无子女（64.70%）且有工作（58.82%）。14 名患者为甲型血友病，最严重的疾病形式更为普遍（64.70%）。根据 WHOQOL-bref 问卷估计的生活质量平均得分为 74.3；“社会关系”领域的平均分最高。Haemo-A-Qol 的平均分为 36.2，得分最高的领域是“计划生育”。
血友病对样本对象的身体、运动和休闲特征产生了更大的负面影响。问卷分析未发现它们之间存在统计学一致性。基于此，Haemo-A-Qol 被认为是评估生活质量最推荐的量表，因为它更具体地涉及与疾病相关的因素。在生活质量得分方面，未观察到合并症的存在、血友病的严重程度和感染阳性血清学之间的统计学显著性。
