Ferreira Adriana Aparecida, Leite Isabel Cristina Gonçalves, Bustamante-Teixeira Maria Teresa, Corrêa Camila Soares Lima, da Cruz Danielle Teles, Rodrigues Daniela de Oliveira Werneck, Ferreira Monica Calil Borges
Hemocentro Regional de Juiz de Fora - Fundação Hemominas, Juiz de Fora, MG, Brazil ; Universidade Federal de Juiz de Fora - UFJF, Juiz de Fora, MG, Brazil.
Rev Bras Hematol Hemoter. 2013;35(5):314-8. doi: 10.5581/1516-8484.20130108.
Studies on health-related quality of life are based on the increasingly evident need for medical care not to be limited to preventing death, but to focus instead on the value of health.
This study aimed to measure the health-related quality of life in hemophilia, using the Hemophilia- Specific Quality of Life (Haem-A-QoL) questionnaire and describe the socioeconomic characteristics and health conditions of these patients.
The Brazilian version of the Hemophilia-Specific Quality of Life questionnaire was administered to hemophiliac adults, treated in an on-demand regime at the Juiz de Fora Regional Blood Center - HEMOMINAS Foundation. The patients were interviewed about demographic and socioeconomic data and their understanding of the questionnaire. Clinical data were collected from medical records. The Mann-Whitney U test was used for statistical analysis. The level of significance was set for p-values < 0.05. Statistical analysis was performed using the Statistical Package for the Social Sciences (SPSS, version 15.0).
Thirty-nine patients were evaluated. The mean age was 36.8 years. 84.6% had hemophilia A; 20.5% of the patients had hemophilia classified as mild, 41% as moderate and 38.5% as severe. The records of 10.5% of the patients registered seropositivity for anti-HIV and 57.9% for anti-HCV. Target joints were detected in 69.2%. The mean total Hemophilia-Specific Quality of Life score was 35.55. 'Sports and leisure'and 'Physical health'were the most impaired dimensions and the dimension 'Relationship and partners'was the least impaired. The Hemophilia-Specific Quality of Life scores showed good discriminant validity for hemophilia severity (p-value = 0.001), HIV-infection (p-value = 0.02), HCV-infection (p-value = 0.01) and the presence of target joints (p-value < 0.001).
Health-related quality of life in hemophilia, measured by the Hemophilia-Specific Quality of Life questionnaire, was influenced by the presence of arthropathy and infectious diseases transmitted by blood products. Rehabilitation measures should be encouraged in order to improve the quality of life of these patients.
关于健康相关生活质量的研究基于一个日益明显的需求，即医疗护理不应局限于预防死亡，而应转而关注健康的价值。
本研究旨在使用血友病特异性生活质量（Haem-A-QoL）问卷来测量血友病患者的健康相关生活质量，并描述这些患者的社会经济特征和健康状况。
向在茹伊斯迪福拉地区血液中心 - 赫莫米纳斯基金会按需接受治疗的成年血友病患者发放巴西版的血友病特异性生活质量问卷。就患者的人口统计学和社会经济数据以及他们对问卷的理解进行访谈。从医疗记录中收集临床数据。采用曼-惠特尼U检验进行统计分析。显著性水平设定为p值<0.05。使用社会科学统计软件包（SPSS，版本15.0）进行统计分析。
对39名患者进行了评估。平均年龄为36.8岁。84.6%的患者患有甲型血友病；20.5%的患者血友病分类为轻度，41%为中度，38.5%为重度。10.5%的患者记录显示抗HIV血清学阳性，57.9%的患者抗HCV阳性。69.2%的患者检测到靶关节。血友病特异性生活质量总评分的平均值为35.55。“运动与休闲”和“身体健康”是受损最严重的维度，“人际关系与伴侣”维度受损最少。血友病特异性生活质量评分对血友病严重程度（p值 = 0.001）、HIV感染（p值 = 0.02）、HCV感染（p值 = 0.01）和靶关节的存在（p值<0.001）显示出良好的判别效度。
通过血友病特异性生活质量问卷测量的血友病患者健康相关生活质量受关节病和血制品传播的传染病的影响。应鼓励采取康复措施以改善这些患者的生活质量。
