title: [Prophylaxis in hemophilia: situation analysis and call-to-action in Latin America. A report from the GLAITH group].
abstract: Prophylactic treatment in the management of hemophilia has been a crucial factor in improving the prognosis and quality of life for people with hemophilia (PCH). However, it is not globally implemented. In Latin America it is difficult to assess the status of PCH and the its management does not conform to ideal standards. The GLAITH group discussed the problem in Latin America. A survey of its members and its findings were discussed at a meeting in Bogota in May 2013. Proportions of hemophilia A and B were 75-90% and 10-25% respectively. Severe hemophilia represents 26-55% of cases. A high percentage of PCH have hemophilic arthropathy. The general care and specific treatments of PCH vary by country, only 50-60% of the treatment is covered and in 85-95% of the cases are performed on an on- demand basis. Just 5-15% receives prophylaxis, most of them secondary. Few countries have a national program or homogeneous records. Finally the GLAITH group proceeded to develop a conclusion and call to action for the region where the following points are recommended: the establishment of a unified Latin American registry; prospective cost-effectiveness studies and evaluation criteria related to secondary prophylaxis; comparative studies of quality of life with and without prophylaxis in the region; promotion of individualization of treatment and, the increase of primary and secondary prophylaxis globally in Latin America.
authors.forename: Mercedes Elena
authors.initials: ME
authors.lastname: Mijares
authors.forename: Apsara Boadas
authors.initials: AB
authors.lastname: De Sánchez
mesh_terms: D006467:Hemophilia A / Q000628:therapy*; D002836:Hemophilia B / Q000628:therapy*; D006801:Humans; D007843:Latin America; D011322:Primary Prevention / Q000379:methods; D011379:Prognosis; D011788:Quality of Life; D055502:Secondary Prevention / Q000379:methods; D012720:Severity of Illness Index