Impact Of Severe Haemophilia A On Patients' Health Status: Results From The Guardian(™) 1 Clinical Trial Of Turoctocog Alfa (novoeight(®) ).

Haemophilia and its treatment interfere with patients' life and may affect adherence to treatment. This study explored the impact of severe haemophilia A on patients' health status, especially in young adults (YA), using data from guardian(™) 1, a multinational, open-label, non-controlled phase 3 trial investigating safety and efficacy of turoctocog alfa (NovoEight(®) ) in previously treated patients aged 12 years and older with severe haemophilia A (FVIII ≤ 1%). Health status was assessed using the EuroQoL-5 dimensions (EQ-5D-3L), covering 5 dimensions of health (mobility, self-care, usual activities, pain/discomfort and anxiety/depression), and a visual analogue scale (VAS) measuring self-rated overall health status. EQ-5D was administered pretreatment (screening/baseline) and posttreatment (end-of-trial). Baseline responses to the EQ-5D dimensions and VAS were described overall and by age and compared to reference values from UK general population. Guardian(™) 1 included 150 patients (16 adolescents, 83 YA aged 16-29 and 51 adults aged 30+). All five dimensions of patients' health status were impacted at baseline. The percentage of haemophilia patients reporting problems was consistently significantly greater than age-matched general population reference values. Likewise, for all age groups mean baseline EQ-5D VAS score was significantly lower for haemophilia patients (YA: 78.0) than for the general population (YA aged 18-29: 87.3). The health status of patients with severe haemophilia A entering guardian(™) 1 was markedly poorer than that of the general population, particularly regarding mobility and pain. YA patients reported better health status than older patients, but considerably lower than that of the general YA population.

Mulheres indigenas: poder e tradição

This study contemplates reports and reflections about gender and the interfaces with work, power and woman's political participation within the Bororo indigenous communities in Mato Grosso, Guarani/Kaiowá and Kadiwéu ones, in Mato Grosso do Sul. In the study with the Bororo community, the woman valorization occurred because she represents the guardian of the culture and of the traditional knowledge, and at the same time, she is an important speaker for the Bororo and the non indigenous society. In the case of Guarani/Kaiowá community, the most important facts are, on one side, the departure of the men and their wish to become city men, and on the other, the women who wish or need to keep the Guarani identity and live in the reserve. In the Kadiwéu community, the most important fact is the women political power and a role division between men and women, without the attribution of more value to one role or the other.

Dimensões ludicas da memoria-trabalho

Universidade Estadual de Campinas . Faculdade de Educação Física