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Ingiäld Hafström1, Sofia Ajeganova2,3, Maria LE Andersson4,5, Sidona-Valentina Bala6,7, Stefan Bergman5,8, Ann Bremander4,5,9, Kristina Forslind4,10, Karina Malm5,11, Björn Svensson4 1Division of Gastroenterology and Rheumatology, Department of Medicine Huddinge, Karolinska Institutet, and Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden; 2Division of Gastroenterology and Rheumatology, Department of Medicine Huddinge, Karolinska Institutet, Stockholm, Sweden; 3Rheumatology Division, Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel, Brussels, Belgium; 4Faculty of Medicine, Department of Clinical Sciences, Rheumatology, Lund University, Lund, Sweden; 5Spenshult Research and Development Center, Halmstad, Sweden; 6Faculty of Medicine, Department of Health Sciences, Lund University, Lund, Sweden; 7Department of Medicine, Section of Rheumatology, Helsingborg’s Hospital, Helsingborg, Sweden; 8Primary Health Care Unit, Department of Public Health and Community Medicine, Institute of Medicine, the Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; 9Department of Regional Health Research, University of Southern Denmark, Odense, Denmark; 10Department of Research and Education, Skånevård Sund, Region Skåne, Helsingborg´s Hospital, Helsingborg, Sweden; 11Rheumatology, Capio Movement, Halmstad, SwedenCorrespondence: Ingiäld HafströmRheumatology Unit, R92, Karolinska University Hospital, 141 86 Stockholm, SwedenTel +46 73 699 6235Email ingiald.hafstrom@karolinska.sePurpose: At the end of the twentieth century, the outcome of rheumatoid arthritis (RA) was shown to be unsatisfactory and new therapeutic strategies were introduced. This initiated a register-based long-term study of early RA, the Better Anti-Rheumatic PharmacOTherapy (BARFOT) study. The aims were to evaluate the disease course and to acquire knowledge for improved care.Patients and methods: BARFOT is a multicentre observational study of patients with early RA, consecutively included 1992–2006. The patients are followed in daily practice according to a structured protocol for 15 years and data recorded in a web-based register. Also, through linkage of the BARFOT register to national registers we have acquired information on comorbidity and mortality.Results: In all, 2857 patients have been included and over 80 scientific articles have been published. Phenotypic characteristics at disease onset, i.e. gender, smoking habits and autoantibody profiles have been addressed. The disease course over 15 years was described. Early predictors for persistent disease activity, impaired function, joint damage and co-morbidities have been identified. Treatment strategies have been studied. A randomized sub-study gave strong support for the treatment of recent RA with low-dose prednisolone in combination with disease-modifying anti-rheumatic drug. Furthermore, the impact of lifestyle factors, such as smoking, alcohol consumption, body weight and physical activity has been addressed.Conclusion: A register-based study like BARFOT has provided a basis for optimal long-term management of patients with RA. In addition, the register has made it possible to perform a diversity of studies of RA addressing various issues of major relevance to the patients.Keywords: patient reported outcomes, PRO, disease progression, prognostic factors, lifestyle, observational study, registry |
