Project and Research Design
The HemoLatin-QoL project aims at developing and psychometric testing a disease-specific quality of life questionnaire for adults with haemophilia. It started in 2002, coordinated by Prof. Dr. Eduardo Remor (Universidad Autónoma de Madrid, Spain) with the co-operation of a several Latin American Haemophilia Care Centers. Therefore, the aim of the project was to develop and test such a measure for use in the region.
The project, was funded by Centre of Latin American Studies at University Autonomous of Madrid and Santander Bank Foundation; and Madrid Autonomous Government (Spain). And was conducted according to a three main-step procedures, see Table below for details.
The project has ended in 2014 (data collection was ended in 2008) and has resulted in a psychometrically tested questionnaire versions for adults, available in spanish and portuguese (BR) languages, which are now ready for use in research and clinical settings.
Table. Summary of the research design, methods of data collection, and procedures
|Steps of the research||Procedures||Participants involved|
|Step 1: Exploratory qualitative study (published [Remor, 2005])||Semistructured interviews Summarizing information regarding categories and salient life domains (bilingual expert)||n = 50 (5 Argentina, 15 Brazil, 5 Colombia, 5 Cuba, 5 Panamá, 5 Uruguay, 8 Venezuela)|
|Step 2: Development of the item pool (published [Remor, 2005])||Definition of the construct being evaluated||Author|
|Drafting of items in Spanish and Portuguese simultaneously||Two bilingual experts|
|Review process by experts rating (at least one by country)||n = 8|
|Review process by patients rating (at least one by country)||n = 9|
|Step 3: Psychometric testing (Published [Remor, 2016])||Assessment of items quality by empirical criteria; Assessment of instrument structure; Assessment of reliability and evidences of validity.||n = 306 (33 Argentina, 97 Brazil, 36 Chile, 50 Nicaragua, 22 Panama, 31 Uruguay, 37 Venezuela)|
Adapted from: Remor, 2016.