He immediately began using the questionnaire in his clinics. “I’ve always been interested in measurement in clinical care,” he says. “That’s what my DNA test was about: measurement. So I’ve always been sort of a ‘quant.’ ”
In 1982, Dr. Pincus inherited a box of records from William Sale, MD, an orthopedic surgery resident who was leaving the university for private practice. Filed inside a carton bearing a Jim Beam whiskey label were records from 75 patients with RA whom Dr. Sale had studied and assessed in 1973.
“That was very far-sighted,” says Dr. Pincus. “I had nothing to do with the assessment, but it included a whole list of questions about daily living as well as joint exams—basically what we do today, but with a less developed methodology.”
The patients had received injections of thiotepa, an antineoplastic alkylating agent. Dr. Pincus was curious how these patients had fared in the nine intervening years because of concern that there might be an increased risk of cancer associated with alkylating agents. He enlisted the help of a medical student, who contacted the patients whose records were in the box. A physical therapist gave Dr. Pincus lessons on performing function measures (grip strength, walking time, and button test), and he began the follow-up with these patients on Saturdays.
Interestingly, Dr. Pincus was able to account for all 75 of the original study patients. “In a way, we were lucky,” he says, “because this part of Tennessee had less population mobility than, say, California and New York.” But even more startling were the results from their efforts. Of the original 75 people, 20 had died—a statistically-significantly higher number than what would have been expected. He also noted severe declines in functional status for almost all the remaining patients. These two findings contradicted the conventional wisdom of the time (based on population studies) that RA was not a severe disease. He also found that premature death in RA could be predicted by two unexpected variables: functional status, as documented on Dr. Sale’s precursor HAQ, and education level.
This was the eureka moment for Dr. Pincus: Outcomes for people with RA could be better predicted by questionnaires than by X-rays or lab tests. His first paper about his findings was initially rejected by many journals; it was then that he realized that promoting the questionnaires as both clinical and research tools would be a struggle.
