Interestingly, the Dutch population presented certain limitations that the investigators turned to their advantage. From James F. Fries, MD, professor of medicine at Stanford University School of Medicine (Calif.), and others working with longitudinal patient databases, Dr. van Riel learned that it is important to collect data, to quantify the amount of response and the amount of disease activity. “But, I also learned that it was not possible to do that [on the same large scale] in the Netherlands,” he says, “because we are a very small country and we have fewer patients.”
His solution? “It’s better to do the same kind of research (collecting data and following patients long-term) but to do it more intensely,” says Dr. van Riel. A national characteristic which facilitated this idea, he explains, is that patients in the Netherlands do not move around as much as their counterparts in the United States. “They will continue to visit you [the rheumatologist] for many, many years. We have patients who have been in our study for 20 to 25 years and have not moved,” he says. “So the advantage is that you can do more precise assessments and you can get a lot more information than if you combine patients in your study from many different centers.” The latter approach, notes Dr. van Riel, can introduce “a lot of noise and variation” into statistical analyses, because patients at different centers will be assessed by different teams of physicians and nurses.
It Takes a Team
Another influence on Dr. van Riel’s thinking about assessment was Howard A. Bird, MD, professor of pharmacological rheumatology at Leeds University in the U.K., who wrote a book about multidisciplinary care of rheumatoid arthritis patients. Dr. van Riel and his colleagues adopted Bird’s approach, which relied on utilization of a nurse-specialist for patient education and clinical assessments, easing the burden on rheumatologists to conduct assessments for their studies. This made collection of data easier, and also motivated patients, says Dr. van Riel, because they benefited from the counseling that nurses delivered.
The approach was not uniformly embraced by his colleagues, however. In the beginning, not all rheumatologists liked the multidisciplinary approach. “They felt, ‘I am responsible for my patients and they should discuss all their problems with me,’” he notes wryly.
It took some time for the approach to be accepted. Dr. van der Heijde notes that the approach “was indeed new at that time. More and more centers are now doing this, but at that time there were very few.” Dr. Landewé agrees: “Initiating that early RA cohort with the help of research nurses was very innovative and unprecedented in those days.”
