Background Patient registries adds valuable information on long term clinical drug effectiveness and safety. Patients treated to target (T2T) by the use of outcome measures have been shown to achieve a better outcome than patients receiving standard care (1). Thus ideally all patients with chronic inflammatory joint disorders should be monitored by the use of outcome measures in daily clinical practice, also advocated by leading experts in rheumatology (2). Despite these recommendations a large proportion of patients are not monitored and treated to target (3). One reason may be non-implementation of computerized systems developed to support targeted patient care.
Objectives The aim of the BIORHEUMA (BIOlogic treatment of patients suffering from inflammatory RHEUMAtic disorders in Norway) project was to implement the use of validated outcome measures and the T2T strategy in daily clinical practice by the use of a designated computerized system. Further to obtain unselected real life data on clinical status and treatment practices in patients with inflammatory rheumatic joint disorders.
Methods From the start of the BIORHEUMA project in 2009 the participating departments were to include and monitor patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS), in particular patients on biologicsusing the GoTreatIT Rheuma system (www.diagraphit.com). This abstract present data on how many patients have been registered at the participating centers in 2010 and in 2011 and the estimated theoretical maximal number of patients eligible for assessment.
Results End of 2011 10 out of 16 eligible rheumatology departments (≥3 rheumatologists) were participating, serving approximately 3/4 of the Norwegian population (3.7 million aged >20 years). In 2010 a total of 8059 RA, 1596 PsA and 1925 AS patients had been registered. The figures for 2011 were 10363 for RA, 2612 for PsA and 3072 for AS. The total number of patients possible to include calculated from published prevalence figures in Norway for RA (∼0.5%), PsA (∼0.2%) and AS (∼0.2%) would be for the complete country/participating departments ∼18500/13875 for RA, ∼7400/5550 for PsA and ∼7400/5550 for AS. The current completeness of the GTI platform end of 2011 is thus about 75% for RA, 47% for PsA and 55% for AS. The most successful departments including patients in the BIORHEUMA project are using nurses and health care secretaries in addition to physicians to collect data and update the database in the daily follow up practice of patients.
Conclusions Our experience with the BIORHEUMA project is thatclinical patient-monitoring and establishing patient registries can successfully be achieved in one work flow when facilitated by the use of designated computerized system. This way of working catching “real life data” improves patient care on the individual and on the group level and comply with the demands from health authorities to provide efficient care and report on quality.
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Pincus T et al. J Rheumatol 2005;32:575-7.
Disclosure of Interest E. Rødevand: None Declared, E. Haavardsholm: None Declared, L. Bader: None Declared, K. Haaland: None Declared, C. Gjesdal: None Declared, B. Storesund: None Declared, H. Gulseth: None Declared, A. Prøven: None Declared, K. Mikkelsen: None Declared, G. Haugeberg Shareholder of: DiaGraphIT manufacturing GoTreatIT, Consultant for: DiaGraphIT manufacturing GoTreatIT