Patient reported outcome measures: their evolution and expansion in urology

Abstract

We describe the history of Patient-Reported Outcome Measures (PROMs) in medicine, with a focus on the development and use of the International Index of Erectile Function (IIEF) in urologic practice. PROMs emerged in the 1970s with tools like the Sickness Impact Profile, designed to capture patients' perspectives on how disease affects daily life. In the 1990s, PROMs entered urology with the creation of the International Prostate Symptom Score (IPSS) and the IIEF, developed in 1992 and 1997, respectively. As organizations such as the National Institutes of Health began prioritizing PROMs for evaluating sexual function, the IIEF gained recognition as a valid and reliable measure of erectile dysfunction severity. The introduction of the abbreviated IIEF-5 further expanded its use in both research and clinical practice. For this review, we searched PubMed for literature on the history, development, and application of PROMs and the IIEF, and conducted an oral interview with Dr. Raymond C. Rosen, the IIEF's primary author. In conclusion, PROMs have long served as essential tools for capturing patients' experiences, and the IIEF has significantly advanced sexual medicine by offering a highly valid and reliable instrument for assessing erectile dysfunction.

Keywords: erectile dysfunction; patient-reported outcome measure; the International Index of Erectile Function.