BIBLIOPRO - Technology Platform of Quality of Life Questionnaires and other Patient Reported Outcomes

BiblioPRO is a virtual library with health-related quality of life instruments and other Patient Reported Outcomes (PRO) in Spanish. BiblioPRO aims to become a Virtual Library of international scientific reference with regards to PRO measurement.

It is a transfer platform that is managed and developed by the Health Services Research Group of the IMIM (Institut Hospital del Mar d’Investigacions Mèdiques) and the Parc de Salut Mar (with the support of the IMIM Foundation), with the participation of CIBERESP.

BiblioPro was developed in response to the authors’ needs to disclose their research results, thereby providing access to other researchers, clinicians, social health managers and industry professionals in Spain. Faced with a growing number of PRO instruments, an evidence based approach is increasingly pertinent on how to:

Identify the available instruments.
Select the most suitable instrument for a specific use.

In the last decade BiblioPRO has become a vital resource for researchers of patient reported outcomes. Although similar initiatives exist, access to detailed information usually requires paying a fee. This project was also created out of the desire to promote the acknowledgement of intellectual property and the respect for the conditions of use of each instrument.

Objectives

Identify patient reported outcome (PRO) questionnaires and health-related quality of life (HRQoL) questionnaires
Compile the highest possible number of questionnaires in a free-access virtual library.
Evaluate the quality of the identified instruments and select the most appropriate ones using a standardised tool (Evaluating Measures of Patient Reported Outcomes - EMPRO).
Facilitate legal access to these questionnaires, assessing the results of research carried out in Spain.

BiblioPRO Content

Open access and free-of-charge information on more than 1,387 questionnaires in Spanish.
Access to 315 questionnaire use and download authorisation sub-licenses, in Spanish.
Access to the Spanish versions (Spain and Latin America) of the SF questionnaires (agreement with QualityMetric).
Access to more than 100 supporting articles (descriptions, bibliographies, related links, score manuals, among others).
Accredited training workshop "Evaluating Measures of Patient Reported Outcomes - EMPRO": evaluating the metric properties of questionnaires.

Scientific Activities

Systematic reviews of journal article bibliographies, allowing basic information from each instrument to be extracted in the form of a Data Sheet in which the variables in the original taxonomy of PRO instruments are specified (Valderas and Alonso, 2008).
Peer-evaluation of the instruments using the original tool - Evaluating Measures of Patient Reported Outcomes (EMPRO)-, which provides information about their metrical and applicability attributes.
The transfer of the results is achieved through the use of new technologies that maximise their dissemination amongst the target audience.
Scientific Meetings (twice a year).
Training Workshops (EMPRO).
Respect for the intellectual property of the research results.

News / Related Documents

Celebración de la II Jornada Científica BiblioPRO (Barcelona, 19 febrero del 2015).

Bibliography (Last 5 years)

Flores-Espinoza C., Aravaya AX, Pizaroo-Berdichevsky J, et al. Validation of the Spanish-language version of the Prolapse Quality of Life Questionnaire in Chilean women. International Urogynecology Journal 2015; 26(1):123-30.
Rajmil, L., Robles, N., Murrillo M, et al. Preferencias en el formato de cuestionarios y en el uso de Internet en escolares.Anales de Pediatría (Barc) 2015;83:26-32.
Bilbao A, Las Hayas C, Forero CG, Padierna A, Martin J, Quintana JM. Cross-validation study using Item Response Theory: the Health Related Quality of Life for Eating Disorders questionnaire – Short version. Assessment 2014; 21(4):477-493.
Schmidt S, Garin O, Pardo Y, et al and the EMPRO Group. Assessing quality of life in patients with prostate cancer: a systematic and standardized comparison of available instruments. Quality of Life Research 2014, 23(8): 2169-2181.
Garin O, Herdman M, Vilagut G et al. Assessing health-related quality of life in patients with heart failure:a systematic,standardized comparison of available measures. Heart Failure Reviews 2014; 359-67.
Schmidt S, Ferrer M, González M, et al. & EMPRO Group. Evaluation of Shoulder-Specific Patient-Reported Outcome Measures: A Systematic, Standardized Comparison of Available Evidence. Journal of Shoulder and Elbow Surgery 2014, 23,3, 434-44.
Schmidt S, Riel R, Frances A, et al. Bladder cancer index: cross-cultural adaptation into Spanish and psychometric evaluation. Health and Quality of Life Outcomes 2014; 12:20. DOI:10.1186/1477-7525-12-20.
Ávila M, Pardo Y, Castells M, et al. Adaptation and validation of the Spanish version of the Patient-Oriented Prostate Utility Scale (PORPUS). Quality of Life Research 2014; 23(9): 2481-2487.
Castellví P, Forero CG, Codony M, Vilagut G, Brugulat P, Medina A, Gabilondo A, Mompart A, Colom J, Tresserras R, Ferrer M, Stewart-Brown S, Alonso J*. The Spanish version of the Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) is valid for use in the general population. Quality of Life Research 2014; 23(3):857-868.
Rajmil L, Robles N, Rodriguez-Arjona D, Azuara M, Codina F, Raat H, Ravens-Sieberer U. Comparison of the web-based and digital questionnaires of the Spanish and Catalan versions of the KIDSCREEN-52: PLOS ONE 2014; DOI: 10.1371.
Vilagut G*, Forero CG, Pinto-Meza A, Haro JM, de Graaf R, Bruffaerts R, Kovess V, de Girolamo G, Matschinger H, Ferrer M, Alonso J, on behalf of the ESEMeD Investigators. The Mental Component of the Short-Form 12 Health Survey (SF-12) as a Measure of Depressive Disorders in the General Population: Results with Three Alternative Scoring Methods. Value Health 2013; 16(4):564-573.
Castellvi P, Ferrer M, Alonso J*, en nombre del equipo del Comité Científico de BiblioPRO. [The patient-reported outcomes (PRO) in research: Definition, impact, classification, measurement and assessment.] Medicina Clínica (Barc) 2013; 141(8):358-365.
Rajmil L*, López AR, López-Aguilà S, Alonso J. Parent--child agreement on health-related quality of life (HRQOL): A longitudinal study. Health Qual Life Outcomes 2013;11(1):101-10.
Rajmil L, Abad S, Sardon O, Morera G, Pérez-Yarza EG, Moreno A, Detmar S, Fekkes M, Herdman M, Alonso J. Reliability and validity of the Spanish version of the TAPQOL: a health-related quality of life (HRQOL) instrument for 1- to 5-year-old children. International Journal of Nursing Studies2011; 48, 549-556.
Comín-Colet J, Garin O, Lupón J, Manito N, Crespo-Leiro MG, Gómez-Bueno M, Ferrer M, Artigas R, Zapata A, Elosua R; VALIC-KC study group. Validation of the Spanish version of the Kansas City cardiomyopathy questionnaire. Revista Española de Cardiologia 2011; 64, 51-58.
Cunillera O, Tresserras R, Rajmil L, Vilagut G, Brugulat P, Herdman M, Mompart A, Medina A, Pardo Y, Alonso J, Brazier J, Ferrer M. Discriminative capacity of the EQ-5D, SF-6D, and SF-12 as measures of health status in population health survey. Quality of Life Research 2010; 19, 853-864.
Garin O, Ayuso-Mateos JL, Almansa J, Nieto M, Chatterji S, Vilagut G, Alonso J, Cieza A, Svetskova O, Burger H, Racca V, Francescutti C, Vieta E, Kostanjsek N, Raggi A, Leonardi M, Ferrer M; MHADIE consortium. Validation of the "World Health Organization Disability Assessment Schedule, WHODAS-2" in patients with chronic diseases. Health Quality of Life Outcomes 2010; 8: 51.

Participating Scientific Groups

CIBERESP

Hospital Vall d’Hebrón de Barcelona (Grupo 08): Dra. Aida Ribera
IMIM-Institut de Recerca Hospital del Mar. G.I. en Servicios Sanitarios (Grupo 09): Dr. Jordi Alonso
Agència de Qualitat i Avaluació en Salut - AQuAS (Grupo 15): Dr. Luis Rajmil
Universidad Pompeu Fabra - CISAL/UPF (Grupo 47): Dr. Jose M. Ramada

CIBERNED

Fundación Cien: Drs.Pablo Martínez-Martín y M. Joao Forjaz

CIBERSAM

Parc Sanitari Sant Joan de Déu: Dra. Susana Ochoa

REDISSEC

Asociación Centro de Excelencia Internacional en Investigación sobre Cronicidad: Drs. Antonio Escobar y José M. Quintana López
Servicio de Evaluación y Planificación del Servicio Canario de Salud: Dr. Juan M. Ramos Goñi

OTHER GRUPOS

Agència de Qualitat i Avaluació en Salut: Dra. Ana García-Altés
Insight Consulting & Research, S.L.: Sr.Michael Herdman
ISM Health, Spain: Dr. Pablo Rebollo

Funding

Acción de Soporte a la Investigación y de Transferencia del CIBER en Epidemiología y Salud Pública desde el año 2007.
Proyecto RECERCAIXA (2010ACUP 00158) 2011-2012 (Fundació IMIM).
AGAUR (2009 SGR 1095 - 2014 SGR 748) - Generalitat de Catalunya (Fundació IMIM).