The Peripatetitc Theodore Pincus, MD

“I really thought that as soon as I told the world about this thing with the questionnaires that everybody would start using them,” he recalls. “In a sense, the questionnaire was a marker like blood pressure or cholesterol: It could predict premature death.”

He took a three-month sabbatical from his lab to rewrite the paper and refine its methods. The three months turned into 26 years. “I never thought I’d be sitting here, still struggling to convince people to use this,” he says. “I thought I would be honored—well, I am honored by this telephone call. I really couldn’t believe that people didn’t use this questionnaire, and I became a proselytizer for its use.”

A Bad Rap for Questionnaires?

Dr. Pincus modified the original HAQ to make it shorter and easier to use in clinical practice. In 1985, he used modern measures to do a repeat of the 1973 Sale study and found that the questionnaire was the best predictor of death in patients with RA at five years post-assessment. In subsequent decades, he has repeatedly proven that the multidimensional HAQ (MDHAQ) is as robust in predicting patient outcomes as the longer version.

The issue of doing outcome measurement for chronic diseases within the context of the individual practice has not been settled to this day, notes Dr. Holman. “When Ted began to deal with the HAQ in the 1980s, doctors—myself included—were very reluctant to add this into our practices. It added a dimension of work that you weren’t reimbursed for, and most people didn’t know how to use it.”

Dr. Holman believes a large part of the resistance stems from medical education’s cleaving to the acute disease rather than the chronic disease model. This transformation in medical education is still in its infancy, he says.

Yusuf Yazici, MD, assistant professor of medicine at New York University Hospital for Joint Diseases, first met Dr. Pincus after a talk he gave at the World Trade Center in 2000, and was convinced to incorporate questionnaires into his practice. “I was just finishing training and starting out, so it was easier to do than to change to another system [of patient evaluation],” says Dr. Yazici.

Dr. Pincus with a patient whose active rheumatoid arthritis has been controlled with a TNF agent.

He believes physicians and patients may have a negative association with questionnaires because of the exhaustive instruments employed in clinical trials. “For them, ‘questionnaire’ means two hours of sitting down with someone to fill it out,” he says. “In the questionnaire that Dr. Pincus has devised, the shorter, simplified version is as robust as the full-length clinical trial questionnaire. And it’s much simpler and more straightforward to use.”