Sociodemographic aspects and quality of life of patients with sickle cell anemia

Juliana Pereira Dos Santos, Mansueto Gomes Neto, Juliana Pereira Dos Santos, Mansueto Gomes Neto

Abstract

Background: Sickle cell anemia is a chronic inherited disease, widespread in the Brazilian population due to the high degree of miscegenation in the country. Despite the high prevalence, there are few studies describing the characteristics of patients and the impact of the disease on quality of life.

Objective: To describe the sociodemographic profile and the impact of the disease on the quality of life of sickle cell anemia patients.

Methods: Over 18-year-old patients with sickle cell anemia who attended meetings held by the Associação Baiana de Portadores de Doenças Falciformes, an association for sickle cell anemia patients in Bahia, were interviewed. Sociodemographic data were collected and the generic the Medical Outcomes 36-Item Short-Form Health Survey (SF-36) questionnaire, which is used to assess quality of life, was applied. The analysis of the descriptive statistics was performed using the Statistics Program for the Social Sciences software.

Results: Thirty-two mostly female (65.6%) patients were interviewed. The mean age was 31.9 ± 12.67 years, 50.0% considered themselves black, 68.8% did not work and 87.5% had per capita income below the poverty line (up to one and a half minimum wages). The SF-36 scores were: limitation by physical aspects 26.56, functional capacity 28.9, emotional aspects 30.20, social aspects, 50.0, pain 50.31, mental health 54.62, general health status 56.09 and vitality 56.71. This shows that the disease has a huge impact on the patients' quality of life.

Conclusion: The disease interferes in the working capacity of individuals, who mostly have low incomes and impaired access to healthcare services and significantly impacts on their quality of life.

Keywords: Anemia, sickle cell; Chronic disease; Health profile; Quality of life; Questionnaires; Socioeconomic factors.

Conflict of interest statement

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

References

    1. Di Nuzzo DV, Fonseca SF. J Pediatr. 5. Vol. 80. Rio J: 2004. Anemia falciforme e infecções; pp. 347–354.
    1. Loureiro MM, Rozenfeld S. Epidemiologia de internações por doença falciforme no Brasil. Rev Saúde Pública. 2005;39(6):943–949.
    1. Silva MC, Shimauti EL. Eficácia e toxicidade da hidroxiuréia em crianças com anemia falciforme. Rev Bras Hematol Hemoter. 2006;28(2):144–148.
    1. Simões BP, Pieroni F, Barros GM, Machado CL, Cançado RD, Salvino MA, et al. Consenso Brasileiro em Transplante de Células-Tronco Hematopoéticas: Comitê de Hemoglobinopatias. Rev Bras Hematol Hemoter. 2010;32(Supl.1):46–53.
    1. Eaton WA, Hofrichter J. Sickle cell hemoglobin polymerization. Adv Protein Chem. 1990;40:63–279.
    1. Yanaguizawa M, Taberner GS, Cardoso FN, Natour J, Fernandes AR. Diagnóstico por imagem na avaliação da anemia falciforme. Rev Bras Reumatol. 2008;48(2):102–105.
    1. Associação Brasileira de Talassemi . Anemia falciforme [Internet] ABRASTA; 2010. [cited 2010 Jun 13]. Available from: .
    1. Galiza GC, Neto, Pitombeira MS. Aspectos moleculares da anemia falciforme. J Bras Patol Med Lab. 2003;39(1):51–56.
    1. Brasil. Ministério da Saúde. Agência Nacional de Vigilância Sanitária - Anvisa . Manual de diagnóstico e tratamento de doenças falciformes [Internet] Brasília, DF: 2002. [cited 2012 Jul 21]. 142p. Available from: .
    1. Hebbel RP. Beyond hemoglobin polymerization: the red blood cell membrane and sickle disease pathophysiology. Blood. 1991;77(2):214–237.
    1. Eaton WA, Hofrichter J. Hemoglobin S gelation and sickle cell disease. Blood. 1987;70(5):1245–1266.
    1. Panzini RG, Rocha NS, Bandeira DR, Fleck MP. Qualidade de vida e espiritualidade. Rev Psiquiatr Clin. 2007;34(1):105–115.
    1. Ciconelli RM, Ferraz MB, Santos W, Meinão I, Quaresma MR. Tradução para a língua portuguesa e validação do questionário genérico de avaliação de qualidade de vida SF-36 (Brasil SF-36) Rev Bras Reumatol. 1999;39(3):143–150.
    1. Moreno F, López Gomez JM, Sanz-Guajardo D, Jofre R, Valderrábano F. Quality of life in dialysis patients. A spanish multicentre study. Spanish Cooperative Renal Patients Quality of Life Study Group. Nephrol Dial Transplant. 1996;11(Suppl 2):125–129.
    1. Seidl EM, Zannon CM. Qualidade de vida e saúde: aspectos conceituais e metodológicos. Cad Saúde Pública. 2004;20(2):580–588.
    1. Maio MC, Monteiro SS. Minayo MC, Coimbra C., Jr . Críticas e atuantes: ciências sociais e saúde na América Latina. Rio de Janeiro: FIOCRUZ; 2005. Etnicidade, raça e saúde no Brasil: questões e desafio; pp. 473–485.
    1. Felix AA, Souza HM, Ribeiro SB. Aspectos epidemiológicos e sociais da doença falciforme. Rev Bras Hematol Hemoter. 2010;32(3):203–208.
    1. Pitaluga WV. Avaliação da qualidade de vida de portadores de anemia falciforme [thesis] Goiânia: Universidade Católica de Goiás; 2006. 108p
    1. Pereira AS, Cardoso CS, Brener S, Proietti AB. Doença falciforme e qualidade de vida: um estudo da percepção subjetiva dos pacientes da Fundação Hemominas, Minas Gerais, Brasil. Rev Bras Hematol Hemoter. 2008;30(5):411–416.
    1. Silva RB, Ramalho AS, Cassorla RM. A anemia falciforme como problema de Saúde Pública no Brasil. Rev Saúde Pública. 1993;27(1):54–58.
    1. Grau Abalo J. Calidad de vida y salud: problemas actuales en su investigacion [Internet]; II Jornada de Actualizacion en Psicologia de la Salud; 2009. [cited 2010 Mar 19]. Available from: .
    1. Roberti MR, Moreira CL, Tavares RS, Borges HM, Filho, Silva AG, Maia CH, et al. Avaliação da qualidade de vida em portadores de doença falciforme do Hospital das Clínicas de Goiás, Brasil. Rev Bras Hematol Hemoter. 2010;32(6):449–454.
    1. McClish DK, Penberthy LT, Bovbjerg VE, Roberts JD, Aisiku IP, Levenson JL, et al. Health related quality of life in sickle cell patients: the PiSCES project. Health Qual Life Outcomes. 2005;3:50–50.
    1. Assis R. Qualidade de vida do doente falcêmico [thesis] Campinas: Universidade Estadual de Campinas; 2004. 82p
    1. Guimarães FF. Adesão ao tratamento em doenças crônicas: verbalizações de diabéticos, hipertensos e cardíacos [thesis] São Paulo: Universidade de São Paulo; 1996. 169 p
    1. Moreno-Jiménez B, Garrosa Hernández E, González Gutiérrez JL. Personalidad resistente, burnout y salud. [cited 2010 Jun 21];Escritos de Psicología. 2000 4:64–77. [Internet] Available from: .

Source: PubMed

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