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. 2013;35(5):325-31.
doi: 10.5581/1516-8484.20130110.

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

Sônia Aparecida Dos Santos Pereira  1 , Stela Brener, Clareci Silva Cardoso, Anna Bárbara de Freitas Carneiro Proietti
Affiliations

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

Sônia Aparecida Dos Santos Pereira et al. Rev Bras Hematol Hemoter. 2013.

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.

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.

Keywords: Quality of life; Questionnaires; Sickle cell trait; Socioeconomic factors.

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Conflict of interest statement

Conflict-of-interest disclosure: The authors declare no competing financial interest

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