Research Notes From the Director

New Directions

Over the last years the NDB has expanded its role by actively including people who have less common rheumatic illnesses like Lupus and others. After rheumatoid arthritis, these other illnesses make up the second largest population that we study, followed by osteoarthritis and fibromyalgia.

Rheumatic illnesses are really quite different. Many affect the joints, some don’t. Some cause skin or bowel problems, most don’t. How can we study all of these different problems with one questionnaire? One reason that we can do it is because almost all illnesses produce functional loss (or the inability to work fully), pain, fatigue and an overall level of severity.

The graph below provides an illustration that you might find interesting. All of the scales in the figure run from 0 to 10, with higher values being worse. Notice that persons with RA, on average, have the highest levels of functional loss. Even so, it is hardly more severe than in persons with OA or fibromyalgia. Pain scores are highest in fibromyalgia and lowest in lupus, reflecting the differences in these illnesses. You might also notice that lupus and fibromyalgia have the most fatigue, reflecting their similarities. I find it intriguing that it is possible to understand illnesses that have different causes and courses by a few simple questionnaire items like these.

If you are like me, you don’t like traveling to the doctor and waiting in the waiting room. About a year ago we spoke to many of you on the telephone and asked about these issues.We asked you about how many miles you were from your doctor and laboratory, how much time you spent going to the doctor or laboratory, and whether people accompanied you. Here’s what we found from this information and from the number of medical visits you make after converting this information to dollar costs, based on how much money your time was worth. On average, you spend $774 per year traveling and waiting. That’s a lot of time and a lot of money. I knew there was more than just one reason for not liking doctor visits!

There is a lot of interesting information in this newsletter. Hope you enjoy it. And, as always, thanks for your help!