Avaliação da qualidade de vida de pacientes portadores de anemia falciforme acompanhados em Hemocentro do estado de Sergipe

Abstract

Sickle cell anemia is the hemoglobinopathy most commonly diagnosed globally, characterizing itself as the most prevalent monogenetic pathology. The homozygous presentation (HgbSS) is the one with the most symptoms and causes important morbidity and mortality. The pain crisis, due to vaso-occlusive phenomena, is the most common acute presentation and the acute chest syndrome is that it can evolve more severely. The treatment of sickle cell anemia extends from symptomatic management in order to minimize acute symptoms and reduce complications, to preventive measures to reduce long-term damage. There is no curative treatment for sickle cell anemia, except for stem cell transplantation, with currently limited and limited indication. Supporting treatment allowed reduction of morbidity and late complications. Hydroxyurea is the only available treatment capable of modifying the evolution of the pathology, reducing vaso-occlusive events, hospitalizations and late lesions. On the other hand, the quality of life did not follow the improvement noted with the current treatment. This has motivated several studies, in which questionnaires are used to evaluate the quality of life of the individual and its context, as well as the variables that may influence it. Studies with this purpose were carried out in several centers, including in Brazil, but none specifically evaluated the Sergipe population with sickle cell anemia. Based on such evidence, a cross-sectional observational study is proposed in order to apply the WHOQOL-bref questionnaire to evaluate the perception of quality of life in patients with sickle cell anemia who are followed up in Sergipe hemocenter. Secondarily, socioeconomic and environmental factors related to quality of life can be evaluated. It is hoped that the results allow, from the perception of how sickle cell disease influences the quality of life, to address certain factors that lead to the improvement of global sickle cell patient care.