Conference Coverage

Patient outcome questionnaires take a beating in talk



– The purpose of patient-reported outcome data is to help physicians understand how patients are faring so they can make better clinical decisions. But commonly used assessments in rheumatoid arthritis aren’t doing their job, rheumatologist Clifton O. Bingham III, MD, said at the annual Perspectives in Rheumatic Diseases.

Dr. Clifton O. Bingham III of Johns Hopkins University, Baltimore

Dr. Clifton O. Bingham III

“We’re really missing the boat in terms of all these things that are important to our patients with rheumatoid arthritis,” said Dr. Bingham of Johns Hopkins Arthritis Center, Baltimore. For example, multiple instruments used in RA ignore important topics such as pain assessment, fatigue, and physical function, he explained at the conference, held by Global Academy for Medical Education.

There’s good news, however. “Can we come up with something that can overcome these barriers?” he asked. “Yes we can.”

First, Dr. Bingham described the weaknesses of patient questionnaires. “Just because an instrument has been used before, like the SF-36, doesn’t necessarily mean that it is measuring what it’s supposed to be measuring or that the information it gathers is important,” he said.

Even instruments that ask about issues important to RA patients can fail to produce a full picture. As Dr. Bingham noted, the Multidimensional Health Assessment Questionnaire (MD-HAQ) and Rheumatoid Arthritis Disease Activity Index (RADAI) instruments do ask about joint stiffness, but they’re only interested in whether patients felt stiff in the morning and how long the stiffness lasted.

In fact, Dr. Bingham said, a 2013 study found that 23% of 288 patients with RA reported having stiffness only in the morning; most had it all day and night or in the morning and evening (Young KO, et al. ACR 2013, Abstract 2273).

Dr. Bingham listed other problems with patient-reported outcome instruments, such as a question on the MD-HAQ about “fatigue or tiredness.” He said patients actually distinguish between the two: “Patients say they’re tired when they don’t get a good night’s sleep, but that’s not the same as fatigue from RA.”

Is there a better way? Dr. Bingham has explored this issue while serving on the executive committee of Outcome Measures in Rheumatology, an international group supported by drugmakers and other entities. (The funding is arms-length, and he is not compensated.)

Dr. Bingham supports the use of the recently developed Patient-Reported Outcome Measurement Information System (PROMIS), which was established by the National Institutes of Health.

“It lets us see how our patients are doing in their real lives and gives us information about their disease in terms of their activity,” Dr. Bingham said.

He pointed to the upcoming results of a survey of patients with RA that found a wide majority of patients believed many questions on the PROMIS-29 and PROMIS short form questionnaires – regarding pain interference, fatigue and physical function – to be sufficient. However, they did want to see more questions about physical function.

A survey of doctors also revealed that PROMIS results often led them to identify new symptoms or comorbidities, and they frequently took action as a result. In some cases, the results spurred adjustments to RA treatment or medication.

“These measures have the right stuff,” Dr. Bingham said.

He suggested exploring the use of PROMIS-29 in conjunction with other assessments as needed.

“You can administer the questionnaires on tablet computers,” said Dr. Bingham, who added that styluses with built-up handles can be useful for patients with RA when they respond to the questions.

“The information comes straight into your medical record,” he said, “and it can be shown to you and your patient at the same time.”

For more about PROMIS, visit

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