Improve MSK status for PWH in Brazil by Measuring, Analysing, Disseminating and Educating

The overall goal of this project is to establish guidelines, surveys and educative materials, focused on the musculoskeletal (MSK) aspects of haemophilia, in order to improve quality of life (QoL) of persons with haemophilia (PWH) through improvements in their physical, mental and social well-being. According to the World Federation of Haemophilia Global Survey Summary (2008), Brazil has the third largest population of PWH, among 108 countries surveyed, with 8172 persons all over the country. From this number, 1500 are from Sao Paolo state, which 333 are registered in our center in Campinas. Although the universal availability of clotting factor concentrates has improved treatment offered for PWH in Brazil within the last 20 years, the therapeutic option actually is largely based upon the replacement, on demand basis. Unfortunately, treatments upon demand basis are not the best strategies to prevent MSK sequels, which are frequently associated with haemophilia and are mostly misunderstood as an inherent and unavoidable condition for these patients. But still now primary prophylaxis is not available and a short-term prophylaxis or even secondary, are provided according to availability and protocols established at each center. Since the treatment for acute bleed is still the therapeutic option prevalent in Brazil, it is imperative the development of sensitive assessment tools to detect early MSK changes allowing prophylactic and/or immediate therapeutic interventions. The haemophilic arthropathy and other MSK manifestations are the most prevalent complication of haemophilia. In Brazil, like other countries, the MSK complication is recognized as the major cause of the deterioration in the PWH QoL, as reported by the Brazilian Court of Audit. This report also pointed out the social conflicts involving stigmatization by the society where the PWH lives, due to the lack of knowledge about the disease. Similarly, the lack of information is worse when involves educators,. Situação: Em andamento; Natureza: Pesquisa. Alunos envolvidos: Mestrado acadêmico: (1) . Integrantes: Marcos Augusto Francisco Borges - Integrante / Margareth Castro Ozelo - Coordenador / Erich Vínicius de Paula - Integrante / Márcia A. Piccoloto Matta - Integrante / Rodrigo Pagnano - Integrante / Janaina Bosso J da Silva - Integrante / Rosalva Ap. Guarnieri Roveri - Integrante / Sulamita da Silva Batista - Integrante. Financiador(es): Novo Nordisk Haemophilia Foundation - Auxílio financeiro.

2011 - 2014