title: Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  Data was collected from clinical records and semi-structured interviews consisting of clinical questionnaires and the World Health Organization Quality of Life-brief questionnaire.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Fundação Centro de Hematologia e Hemoterapia do Estado de Minas Gerais - HEMOMINAS, Belo Horizonte, MG, Brazil.
authors.forename: Sônia Aparecida Dos Santos
authors.initials: SA
authors.lastname: Pereira
authors.forename: Stela
authors.initials: S
authors.lastname: Brener
authors.forename: Clareci Silva
authors.initials: CS
authors.lastname: Cardoso
authors.forename: Anna Bárbara de Freitas Carneiro
authors.initials: AB
authors.lastname: Proietti
keywords: Quality of life; Questionnaires; Sickle cell trait; Socioeconomic factors