Pereira Sônia Aparecida Dos Santos, Brener Stela, Cardoso Clareci Silva, Proietti Anna Bárbara de Freitas Carneiro
Fundação Centro de Hematologia e Hemoterapia do Estado de Minas Gerais - HEMOMINAS, Belo Horizonte, MG, Brazil.
Rev Bras Hematol Hemoter. 2013;35(5):325-31. doi: 10.5581/1516-8484.20130110.
Sickle cell disease comprises chronic, genetically determined disorders, presenting significant morbidity and high prevalence in Brazil. The goal of this study was to evaluate the quality of life of sickle cell disease patients (hemoglobin SS and SC) and their sociodemographic and clinical characteristics.
Data was collected from clinical records and semi-structured interviews consisting of clinical questionnaires and the World Health Organization Quality of Life-brief questionnaire.
Interviews were conducted with 400 patients, aged between 18 and 72, treated in the Fundação HEMOMINAS in Belo Horizonte. The participants predominantly had sickle cell disease hemoglobin SS variant (65.5%), were female (61.8%), single (55.3), with up to 8 years of schooling (49.6%), and self-defined as mulattos (50%). Pain crises, hospitalizations, blood transfusions, and other morbidities of sickle cell disease had a significant impact on the quality of life of these patients.
Within this group, the social profile was that of low income and unemployed with sickle cell disease considered to be a significant impediment to finding a job. Evaluating quality of life as a determining factor of health is essential for the creation of specific policies and measures, appropriate for the specific characteristics and social context of sickle cell disease.
镰状细胞病包括慢性、由基因决定的疾病，在巴西发病率高且发病情况严重。本研究的目的是评估镰状细胞病患者（血红蛋白SS型和SC型）的生活质量及其社会人口学和临床特征。
数据收集自临床记录以及由临床问卷和世界卫生组织生活质量简表组成的半结构化访谈。
对400名年龄在18至72岁之间、在贝洛奥里藏特的HEMOMINAS基金会接受治疗的患者进行了访谈。参与者主要患有镰状细胞病血红蛋白SS变异型（65.5%），女性（61.8%），单身（55.3%），受教育年限达8年（49.6%），且自我认定为混血儿（50%）。镰状细胞病的疼痛危机、住院、输血及其他发病情况对这些患者生活质量有显著影响。
在这一群体中，社会概况是低收入且失业，镰状细胞病被认为是找工作的重大障碍。将生活质量评估作为健康的决定因素，对于制定适合镰状细胞病特定特征和社会背景的具体政策和措施至关重要。
