Background Patient reported outcomes (PROs) are being more frequently used in rheumatology to evaluate treatment response and to guide clinical decisions. In order to standardize and enhance the use of these measures a structured database including the main cross-culturally validated PROs in rheumatic and musculoskeletal diseases was developed: the EULAR Outcomes Measure Library (OML)1. This is an in-progress library led by rheumatologists freely available online since November 2013 (http://oml.eular.org/) and connected to the main EULAR website.
Objectives To evaluate the use and dissemination of the EULAR OML during the first two years of functioning.
Methods The EULAR OML includes to date 138 measures covering any domain of health identified through systematic reviews. The PROs are generic (across diseases) or specific, being the most represented diagnosis rheumatoid arthritis (RA) (33 instruments), osteoarthritis (OA) (27), spondylarthritis (23), fibromyalgia (21), systemic lupus (20), low back pain (15), osteoporosis (12), and juvenile idiopathic arthritis (6). The PROs search can be performed by disease, domain, or language. All PROs are validated at least in English but versions in other languages are also included being the most frequent cross-validated versions in French (54 instruments), Spanish (53), Dutch (49), and German (46). A glossary with validation aspects is available for educational support. The OML is regularly updated using search strategy alerts in PubMed and based on a network of volunteers, who may propose the inclusion of new instruments. A summary of the statistics of the website is presented.
Results Over the first two years, the OML has been increasingly used with an accumulated 41,641 page views and 25,926 visits (Figure). The mean of visits per month is 571 with a mean of 333 new visitors per month. Tuesdays and Wednesdays are the peak days for visits. The PROs being downloaded most frequently are: the evaluation of ankylosing spondylitis quality of life (EASI-QOL) (11.6%), the multidimensional health assessment questionnaire (MDHAQ) (8.8%), the RA quality of life scale (RAQoL) (7.4%), and the Western Ontario McMaster OA index (WOMAC) (3.4%). The devices more frequently used are iPad (42%), android (31%), and iPhone (26%). The European countries with most users are France and Germany (15% each), The United Kingdom (13.7%), Ukraine (9.4%), and Spain (6.7%). Other non-European countries are also users of the Library, in particular the United States of America (19.8%), and China (12.5%).
Conclusions The use of the EULAR OML freely available website is increasing over time. This website includes a detailed description of each instrument, recommendations for use, information about validation, and versions in different languages. There are many instruments that still need to be included. We expect that unified access to this information will contribute to a better use of PROs. We invite everyone to contact us if willing to contribute to keep the EULAR OML updated and useful.
Castrejon I, Carmona L, Agrinier N, et al. Clin Exp Rheumatol 2015;33:910–6
Disclosure of Interest None declared