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| Indexado |
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| DOI | 10.1111/HAE.13607 | ||||
| Año | 2018 | ||||
| Tipo | artículo de investigación |
Citas Totales
Autores Afiliación Chile
Instituciones Chile
% Participación
Internacional
Autores
Afiliación Extranjera
Instituciones
Extranjeras
Introduction The study is the first application of the Principles of Haemophilia Care for Europe (PHCE) in other regions of the world, specifically in Latin America. Objective Methods To identify strengths in the care of haemophilia, and the aspects that should be improved. The information was obtained through a questionnaire designed according to the PHCE and answered by specialists in mid-2016. The countries included were as follows: Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Mexico, Panama, Dominican Republic and Venezuela. Results Conclusion In most countries, there is a central organization for haemophilia care supported by local groups. The existence of a national registry of people with haemophilia (PWH) was verified in eight countries. Centres of integrated care are located in large cities. In the majority of countries, there was no evidence of the participation of multiple actors in the decision-making. The supply of factor concentrates presents constraints, although it is reported as adequate in half of the countries. In most countries, home treatment is available under special conditions. In most countries, there are restrictions on the use of prophylaxis. The coordination of specialized and emergency services depends on each centre. Unrestricted treatment of inhibitors is performed in most countries. In all countries, there are human resources training programmes; however, clinical and health services researches are not widely developed. The study identifies the initial situation of principles of care, as well as the alternatives that must be implemented to achieve improvements in the quality of life of PWH in the region.
| Ord. | Autor | Género | Institución - País |
|---|---|---|---|
| 1 | Boadas, Apsara | - |
Banco Municipal Sangre DC - Venezuela
National Haemophilia Centre - Venezuela |
| 2 | Ozelo, Margareth C. | Mujer |
UNIV ESTADUAL CAMPINAS - Brasil
Universidade Estadual de Campinas - Brasil |
| 3 | Solano, Maria | Mujer |
San Jose Hosp - Colombia
Fundación Universitaria de Ciencias de la Salud - Colombia |
| 4 | Berges, Adolfina | Mujer |
IMSS - México
Instituto Mexicano del Seguro Social - México |
| 5 | Ruiz-Saez, Arlette | Mujer |
Banco Municipal Sangre DC - Venezuela
National Haemophilia Centre - Venezuela |
| 6 | Linares-Ballesteros, Adriana | Mujer |
UNIV NACL COLOMBIA - Colombia
Universidad Nacional de Colombia - Colombia |
| 7 | LAMAS-CASTELLANOS, JOSE LUIS | Hombre |
Hospital Dr Sotero del Rio - Chile
|
| 8 | Aparicio, Rafael | Hombre |
Clin Congenital Coagulopathies - Panamá
Clinic of Congenital Coagulopathies - Panamá |
| 9 | Aversa, Luis Alberto | Hombre |
Ricardo Gutierrez Childrens Hosp - Argentina
Hospital de Ninos Ricardo Gutierrez - Argentina |
| 10 | Baques, Alejandra | Mujer |
Cesar Milstein Hosp - Argentina
Cesar Milstein Hospital - Argentina |
| 11 | Estrada, Armando | Hombre |
Benjamin Bloom Childrens Natl Hosp - El Salvador
Benjamin Bloom National Children's Hospital - El Salvador |
| 12 | Herrejon, Misael | Hombre |
Morelia Childrens Hosp - México
Morelia Children´s Hospital - México |
| 13 | Mancia, Ana | - |
Benjamin Bloom Childrens Natl Hosp - El Salvador
Benjamin Bloom National Children's Hospital - El Salvador |
| 14 | Nieves-Paulino, Rosa | Mujer |
Dr Robert Reid Cabral Childrens Hosp - República Dominicana
Robert Reid Cabral Children's Hospital - República Dominicana Hospital Infantil Dr. Robert Reid Cabral - República Dominicana |
| 15 | Pinto, Ieda | - |
HEMOPA - Brasil
|
| 16 | Prezoti, Alessandra | Mujer |
Estado Espirito Santo HEMOES - Brasil
Centro de Hemofilia - Brasil |
| 17 | SOTO-ARELLANO, VERONICA | Mujer |
Roberto del Rio Childrens Hosp - Chile
Roberto del Rio Children´s Hospital - Chile Hospital de Niños Roberto del Río - Chile |
| 18 | Ugalde, Dani | Hombre |
Childrens Natl Hosp - Costa Rica
Caja Costarricense de Seguro Social - Costa Rica |
| Fuente |
|---|
| Shire |
| Baxalta |
| Federation of Haemophilia of the Republic of Mexico |
| Simon Bolivar University of Venezuela |
| Agradecimiento |
|---|
| Baxalta now part of Shire; Baxalta; Shire |
| MHS and A Baques received fees from the sponsor for participating as a speaker at meetings. RN, RA and AL received fees from the sponsor for participating in project meetings. AP and MCO have received fees from the sponsor for participating in other projects and as board members. JL has received fees from the sponsor for participating in other projects. Other authors stated that they had no interests which might be perceived as posing a conflict or bias. This work was supported by a grant from Baxalta now part of Shire. Maurilia Carrabs (formerly from Shire) supported the implementation of this project. Marino Gonzalez and Elena Rinc?n, from the Unit of Public Policy of the Simon Bolivar University of Venezuela, supported the editing of the paper. |