Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders

Abstract

ObjectiveSickle 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. MethodsData was collected from clinical records and semi-structured interviews consisting of clinical questionnaires and the World Health Organization Quality of Life-brief questionnaire. ResultsInterviews 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. ConclusionWithin 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.

Quality of life in adults with sickle cell disease: an integrative review of the literature

“…Socio-demographic and genotype aspects of study participants Among the 22 articles selected, the majority of the participants were: women in 21 (95.5%) (1)(2)(3)(4)(5)7,(13)(14)(15)(16)(17)(18)(20)(21)(22)(23)(24)(25)(26)(27)(28) , with HbSS / Sβº Tal genotypes in 19 (86.4%) (1)(2)(4)(5)7,(13)(14)(15)(16)(17)(19)(20)(22)(23)(24)(25)(26)(27)(28) ; unmarried children in 13 (59.1%) (1,(3)(4)(5)13,15,(20)(21)(22)(23)(24)…”

The relationship between genotype, psychiatric symptoms and quality of life in adult patients with sickle cell disease in São Paulo, Brazil: a cross-sectional study

“…2,3 Pain crises, hospitalization, blood transfusions and other morbidities have been found to have a significant impact on these patients' quality of life. 4 The disease also influences these individuals' work capacity: they generally have low income levels and little access to healthcare services, which in turn has a significant impact on quality of life. 5 Functional status and quality of life may be worse among adult patients with sickle cell disease due to the presence of comorbitities, 2 taking into account that psychiatric patients suffer greater harm in terms of quality of life than do patients with no psychiatric comorbidities.…”

Aspectos sociais dos pacientes com �lcera de perna na doen�a falciforme: revis�o integrativa

“…Os indivíduos portadores de DF, em idade economicamente ativa, possuem escolaridade em nível fundamental e, consequentemente, remuneração baixa de até dois salários mínimos. As complicações provenientes da doença resultam em baixa competitividade profissional e menor poder aquisitivo de modo a influenciar negativamente na vida dessas pessoa (18,(20)(21)(23)(24)26) . Quanto à escola, é possível que em alguns momentos o paciente necessite se ausentar devido a episódios de dor e à necessidade de um constante acompanhamento ambulatorial e realização de consultas e exames.…”