From his first experiences seeing patients with rheumatic diseases, Dr. Kvien had observed a lack of evidence for clinicians’ treatment decisions. He determined that, if he were to go into research—as he had been encouraged to do by his mentor—“it should be something relevant for clinical practice,” he says. He felt it would be crucial to “extrapolate research findings into improvement of patient care.”
Building on Lessons
Since the 1980s, Dr. Kvien had been aware of and was intrigued by the work of U.S. and Canadian researchers who were collecting quantitative data from clinic patients (through instruments such as the Health Assessment Questionnaire and Visual Analog Scale) and storing these in longitudinal databases. Along with other Scandinavian rheumatologists, he had attended an Arthritis, Rheumatism, and Aging Medical Information System (ARAMIS) meeting at Stanford University in Stanford, Calif., in 1987 and returned to the U.S. in 1991, visiting first with Ted Pincus, MD, who was then professor of medicine and microbiology at Vanderbilt University School of Medicine in Nashville, then with Fred Wolfe, MD, in Wichita, Kan., and the collaborative research group in Salt Lake City.
“There were very few of us actually collecting data from our patients,” notes Dr. Wolfe, medical and research director of the National Data Bank for Rheumatic Diseases and clinical professor of medicine at the University of Kansas School of Medicine in Wichita. “We had some ideas, from our experience, of what was easy, what was difficult, what was valid and what wasn’t, and which data should be collected,” recalls Dr. Wolfe. “And Dr. Kvien, surprisingly, went away believing us!” he chuckles.
Dr. Kvien returned to Norway with great enthusiasm for what he had learned from that trip to the U.S., and became, in Dr. Pincus’ words, “an early adapter” of their methods. He established the Norwegian branch of the European Research on Incapacitating Diseases and Social Support (EURIDISS) cohort in 1991 with “early” rheumatoid arthritis (RA) patients (less than four years’ duration); these patients completed their 15-year follow-up in 2007. One study, led by his first PhD trainee, Liv Marit Smedstat, MD, PhD, tracked the relationship between psychological distress and traditional clinical variables in a two-year prospective study of 216 patients with early RA. That study found that psychological variables were important in the prognosis and description of patients’ conditions, which is similar to results shown by Drs. Pincus and Wolfe.
The Oslo Rheumatoid Arthritis Register was established in 1994. Dr. Kvien expanded upon the methods he learned from Drs. Pincus and Wolfe, adding other variables and making these data available for epidemiology studies and population surveys. For example, it was not possible to establish a national register of patients treated with biological agents in Norway. However, together with four other hospitals in Norway, the NOR-DMARD study was started in 2000. “We realized that we would never be able to reach the level of the big registries, but we built an alternative focus on both biological and synthetic DMARDs [disease-modifying antirheumatic drugs] and including all inflammatory arthropathies. In this way, NOR-DMARD has provided some important information that is complementary to other and larger registries,” notes Dr. Kvien.