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

Abstract

BackgroundSickle 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. ObjectiveTo describe the sociodemographic profile and the impact of the disease on the quality of life of sickle cell anemia patients. MethodsOver 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. ResultsThirty-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. ConclusionThe 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.

The Effectiveness of Self Management Program on Pain, Fatigue, Depression, Anxiety, and Stress in Sickle Cell Patients: A Quasi-Experimental Study

“…In managing serious and unpredictable complications, patients with SCD suffer numerous psychosocial problems such as reduced self-esteem, feelings of frustration (7), depression (7)(8)(9), anxiety and stress (8), and disruption of interpersonal relationships (10); these often lead to fatigue (11)(12)(13)(14) and poor quality of life (13,(15)(16)(17) in these patients. Bakri et al (10) showed that depression, anxiety and stress are prevalent in SC patients compared with healthy subjects.…”

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

“…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. 6 In Brazil, it has become a public health issue because it leads to major socioeconomic problems due to the diminished job opportunities that these patients face in the labor market.…”

Attitudes Among Healthcare Providers and Patients Diagnosed With Sickle Cell Disease

“…Patients with SCD have families, go to school and work, have friends, and function in society. Many studies have also illustrated some of the stressors and physical challenges associated with SCD in adults, children, and families (Dos Santos & Gomes, 2013;Hildenbrand, Barakat, Alderfer, & Marsac, 2013). Complications associated with SCD are rather common and increase in incidence with aging (Blinder et al, 2013).…”