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. CONCLUSION 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.