Navegando por Palavras-chave "Hemophilia"

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    Aspectos evolutivos de pacientes hemofílicos infectados pelo vírus da hepatite C
    (Universidade Federal de São Paulo (UNIFESP), 2020-12-10) Bastos, Dauana Arruda De Oliveira [UNIFESP]; Ferraz, Maria Lucia Cardoso Gomes [UNIFESP]; Universidade Federal de São Paulo
    Introduction: The improvement in the treatment of hemophilia from the 90's, as well as the advent of interferon-free therapy against the hepatitis C virus (HCV) for infected patients, enabled a better evolution of these special group of patients. However, the impact of hemophilia on the progression of liver fibrosis is still not completely understood. Objectives: To evaluate the progression of liver fibrosis in hemophiliac patients with HCV using non-invasive methods, in viremic (HCV-RNA positive) and non-viremic (HCV-RNA negative) patients, after ten years of follow-up. Casuistic and Method: Retrospective cohort study of hemophiliac patients with HCV followed since 2007 in a single tertiary Hematology center and reassessed 10 years later (2017/2018), in relation to biochemical tests, hepatic fibrosis (APRI, FIB-4 and transient hepatic elastography by Fibroscan ® - EHT), performance and response to antiviral therapy and outcome. The comparative statistical analysis was performed using the Wilcoxon test and the global survival curve was constructed using the Kaplan-Meier method. Results: The group of 66 patients evaluated in 2007 were men, with a median age of 31.5 years and 58 patients (87.9%) with hemophilia A. In the year 2017/2018, 42 (63.7%) patients were on medical follow-up and composed the revaluation sample. Antiviral therapy was performed in 33/42 patients and 30 (90.9%) reached SVR; thus, 30 and 12 patients (3 without SVR and 9 untreated) were non-viremic and viremic in the reassessment, respectively. There was a significant reduction in aminotransferases among the 30 non-viremic patients: AST (median 0.71 and 0.50, p <0.001), ALT (median 0.63 and 0.53, p = 0.026) and GGT (median 0.82 and 0.60, p = 0.004), between 2007 and 2017/2018, respectively. Also the APRI values showed a significant reduction (median of 0.36 and 0.20 in the two periods, p <0.001) only in the group without viremia. In relation to FIB-4, the values remained stable among patients with HCVRNA negative, and there was progression only among those with HCVRNA positive. Regarding the analysis of fibrosis by EHT, 8/33 treated patients (7 with SVR) performed it in the pre and post-treatment periods. There was a significant reduction in liver stiffness values in the post-treatment period (median from 7.9 kPa to 3.2 kPa, p = 0.018) among non-viremic patients. For the remaining 25/33 patients, the analysis of fibrosis by EHT was performed on a single occasion, and when done before treatment or in untreated patients, it showed few patients with advanced degrees of fibrosis. Regarding the outcome, the average cumulative overall survival of the 66 patients in the study, since the diagnosis of HCV infection, was 23.02 years (95% CI 24.49; 27.53). Conclusions: The results suggest a slower progression and a more benign evolution of hepatic fibrosis among hemophilics, with a different prognosis in relation to non-hemophiliac patients.Antiviral therapy against HCV showed an elevated response rate, similar to the general population.
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    Rede de apoio à criança e ao adolescente com hemofilia: a integração saúde/escola
    (Universidade Federal de São Paulo (UNIFESP), 2018-04-25) Raposo, Renata Nunes [UNIFESP]; Ferreira, Beatriz Jansen [UNIFESP]; http://lattes.cnpq.br/2401449110051240; Universidade Federal de São Paulo (UNIFESP)
    A Hemofilia é um distúrbio de coagulação do sangue. Importantes aspectos psicossociais perpassam por todos os ciclos de vida do hemofílico e sua família, dentre eles a inserção na vida escolar. Esta pesquisa pautou-se na perspectiva de análise da escola inclusiva enquanto rede de apoio para a criança/adolescente hemofílica. O contexto da pesquisa se deu nas escolas do município de São Paulo e Grande São Paulo catalogadas pelo Serviço de Hemofilia do Hospital São Paulo (HSP) e o público-alvo foi composto por gestores, professores e familiares dos usuários. A pesquisa teve o desenho qualitativo, com caráter exploratório e descritivo. Para a coleta de dados foram utilizadas entrevistas individuais semiestruturadas, sendo tratadas pela Análise de Conteúdo na modalidade temática. Foram construídos três eixos: desafios da escola enquanto rede de apoio para a criança/adolescente com hemofilia, ações intersetoriais e outras estratégias fortalecedoras para a escola enquanto rede de apoio para a criança/adolescente com hemofilia e a centralidade do conhecimento sobre a doença na perspectiva do acolhimento e inclusão da criança/adolescente com hemofilia, que evidenciaram a família como principal fonte de informação sobre hemofilia, a falta de integração entre os atores da escola, o não reconhecimento da escola enquanto integrante ativa da rede de apoio, assim como as dificuldades de inclusão de uma doença com baixa prevalência e suas marcas, tais como: desinformação, medo e superproteção. Evidenciou-se também a falta de integração entre o Serviço de Hemofilia e Outras Coagulopatias Hereditárias do HSP e as escolas por ele atendidas e a inexistência de ações intersetoriais entre Secretaria de Educação e Saúde.