26/02/2013 - Press release
These instruments are significant on the clinical research and health care because they allow a more complete assessment of patients, services and health-costs.
The Patient-Reported Outcomes (PRO) have become significant health and quality of life indicators in clinical and epidemiological research. The health reported by patients has such an important predictive power as mortality, services demand and health costs.
BiblioPRO is the first virtual library in the world specialized in these health-related quality of life instruments, the PROs, in Spanish, classified and documented following a conceptual and rigorous classification form. It includes instruments designed originally in Spanish, as well as cultural adaptations developed by Spain and Latin America, because most of these instruments have been carried out in English-speaking countries.
This virtual library is free accessed and has all the basic information (name, disease, original author contact, as well as the author of adaptation, measure type, location, age, etc.) from more than 700 questionnaires. The objective is to promote an appropriate use on research providing online exhaustive information, evidence based assessment and specific formation in this area. Besides, BiblioPRO pretends to identify the highest number of existing instruments to assess health results, facilitating the selection of the most appropriate ones through a scientific methodology, always ensuring the intellectual property rights and all the legal requirements.
The appropriate use of these instruments is useful in different situations and it allows making a better detection as well as a better monitoring of the assessed health states. For example, a 65 years-old man who has just been diagnosed with prostate cancer, can be explained by the doctor about the benefits of various available treatments in terms of not only surveillance, but also associated quality of life.
This past Thursday, the research group on health services of IMIM organized the I Scientific Meeting BiblioPRO directed to questionnaire authors and researchers from Spain and Latin America, institutional, pharmaceutical industry and health services representatives with the objective of promoting the knowledge of instruments about patient reported health outcomes and establishing a framework about the methodology to be developed in the elaboration, adaptation and validation of these instruments.
The official inauguration went in charge of Dr. Marta Aymerich, Responsible of Research in the Health Department of the Government of Catalonia and the inaugural conference was facilitated by Prof. David Cella, Professor of the Northwestern University of Chicago, USA. Besides, the round table about BiblioPRO was moderated by Dr. Montserrat Ferrer, researcher of IMIM and various parallel scientific sessions about development and adaptation, cancer, chronic diseases, mental health, muscular-eskeletal health and satisfaction.The closing went in charge of Dr. Jordi Alonso, director of the Epidemiology and Public Health Program of IMIM and scientific coordinator of BiblioPRO.
The meeting, where 170 people attended and which could be followed by streaming, was an opportunity to present scientific innovations inside this field of research and to spread a code of good practices in the use of these quality of life assessment instruments.