The promise of the future, updated: better outcome tools, greater relevance, more efficient study, lower research costs

Better tools are needed to evaluate our treatments for rheumatic diseases. The long-overdue patient-reported outcome measurement information system project is a NIH roadmap initiative to build better instruments for measuring patient-reported outcomes through use of item banking, item response theory and computerized adaptive testing. The resulting tools are intended to supplant current standards, such as the health assessment questionnaire and the SF-36, and will enable greater study power with reduced sample sizes, as well as integrating greater relevance to the patient into the measures. In some part of early prehistory, it was noticed that clinical studies required ‘dependent variables’ by which to judge the study results. In complex chronic illnesses, such as rheumatoid arthritis (RA), such dependent variables need to provide summary end points and to reflect the values of patients as well as health professionals. Under the medical model, dependent variables were traditionally typified by the erythrocyte sedimentation rate (ESR) and the number of swollen or tender joints as counted by a physician. Curiously, these dependent variables were accepted as a matter of faith and were very rarely an object of study. Had they been studied, it would have been easily observed that there was an extraordinary amount of noise in these variables, with great variability in repeated measurements, between observers, between the same observer on different days, and across laboratories. The ESR and the joint counts are simply not very reproducible. It would have been observed just as easily that the ESR or joint counts did not correlate