The HemoLatin-QoL is a disease-speciﬁc instrument for assessing quality of life in adults living with hemophilia (Remor, 2005; 2016) and is now available for use in research. It has been developed in a collaborative multinational Latin-American working group, in cooperation with hemophilia treatment centers and national hemophilia organizations from 10 Latin-American countries (i.e. Argentina, Brazil, Chile, Colombia, Cuba, Guatemala, Nicaragua, Panama, Uruguay and Venezuela). The research development of the instrument followed a patient-centered method.
Development of the instrument consisted of two separate main studies. The first focusing on the development of the pool of items for the instrument, simultaneously in 8 countries, leading to a 47-item preliminary version built after careful development and evaluation by hemophilia experts and patients regarding comprehensiveness and relevance to hemophilia.
The second, consisted of a field international validation study of the Hemolatin-QoL questionnaire assessing psychometric properties of the instrument (Remor, 2016). Two new Latin American countries were included in the project at this phase (i.e. Nicaragua and Chile). The final version of the Hemolatin-QoL (27-item) is a high quality disease-speciﬁc bilingual questionnaire developed on an international basis using patient-centered methods. It is available in two language versions: Latin-American Spanish and Brazilian Portuguese.
HemoLatin-QoL is indexed by PROQOLID/ePROVIDE (Mapi Research Trust, France)
This project has been supported by grants from:
2009 – Autonomous University of Madrid and Community of Madrid [Project nº CCG08-UAM/HUM-4462], Spain.
2002-2004 – Centre of Latin American Studies/UAM and Santander Bank Foundation. [Project nº PD02-541A-Q-640 ], Spain.