Genética comunitária e hemofilia em uma população brasileira

Abstract

Hemophilia is an important hemorrhagic disease in Brazil, affecting about 1 out of every 10,000 males. Patient's self-perception of hemophilia and interaction with the community are relevant to the clinical management of this disease. We investigated several social, psychological, and community aspects of hemophilia in a Brazilian population (Campinas, São Paulo State), interviewing 30 hemophiliac males, a control sample comprised of 73 non-hemophiliac brothers, and 641 individuals from the community. According to our results, more severe social disability in the hemophiliac patient was related to economic factors, mainly unemployment; however, no difference was found in relation to marital status, reproduction, or education. Self-perception of changes in health and lifestyle by individuals with hemophilia showed frequent self-stigmatization, along with depression, anxiety, and insecurity. The community showed a widespread lack of familiarity with hemophilia (49%), viewing people with hemophilia with the kinds of prejudices often observed in relation to people with infectious diseases, like AIDS. The paper concludes by recommending that a community-based program be implemented to improve the social adjustment status of individuals with hemophilia.

Factors Associated With Subjective Well-Being In Adults With Hemophilia

“…Caio et al [17] reported that there were no significant differences between the levels of education among patients with hemophilia and their nonhemophilia siblings. The results of the research carried out by Ferreira et al [20] demonstrated that 21 (53.8%) patients with hemophilia had the highest number of years of study (ranging from 9 to ≥12 years).…”

“…Caio et al [17] mentioned that the constitution of a family represents an important point of support for the adult with hemophilia. However, the lack of access to a satisfactory regular employment is the major factor of social inadequacy.…”

“…Differing results were presented by Garbin et al [14], where there was a predominance of hemophilia patients with complete secondary education (40%) followed by incomplete elementary school level (30%) and the research developed by Nunes et al [16], where the predominant educational level was the incomplete elementary (45.5%). Caio et al [17] reported that school absenteeism was frequent in people with hemophilia, related to the physical impairment that the disease gives the affected individual and 50% of the sample recorded interference of the disease in school life.…”

“…Almeida et al [15] corroborate these findings and describe that the clinical classification of its participants was 60.6% severe, 33.4% moderate and 6% mild. The fact that there is a greater number of patients with moderate clinical categorization in these studies to the detriment of those with mild categorization is due to the patient´s dependence on their place of treatment, greater knowledge about their disease and participation in the patients' association, besides living under constant threat of unexpected bleeding [17]. Often, mild hemophilia is diagnosed only in adulthood, with bleeding after trauma or surgery [5].…”

Custo-efetividade do fator VII ativado recombinante (rFVIIa) e complexo protrombínico parcialmente ativado (CCPa) no tratamento sob demanda do sangramento leve/moderado de pacientes com hemofilia congênita complicada por inibidores sob a perspectiva do sistema público de saúde do Brasil

“…Uso de recurso segundo You et al (2009) terfere gravemente na qualidade de vida das pessoas com essa condição. As hemorragias geralmente ocorrem nas grandes articulações, podendo causar muita dor e danos permanentes e incapacitantes se não forem tratadas adequadamente (Caio et al, 2001;Pacheco et al, 2002). Três componentes podem afetar esses pacientes: o primeiro corresponde à atitude do indiví-duo perante sua enfermidade, seu sentimento de impotência diante dos sangramentos e a visão de não ser uma pessoa normal.…”