Underrepresentation in Pelvic Floor Disorder Patient-Reported Outcomes: Whose Outcomes Are We Measuring?

Abstract

Patient-reported outcome (PRO) instruments measure the patient's perspective. It is unclear whether commonly used PRO measures were tested in populations that had racial and ethnic distributions comparable with those reported in U.S. census data. The aim of this study was to compare the proportion of non-White race and Hispanic ethnicity participants with their expected proportion based on U.S. census data for PRO instruments with U.S.-based validation studies. This was a retrospective review of PRO measures considered by the Pelvic Floors Disorders Consortium Working Group on Patient-Reported Outcomes in their 2020 consensus publication. Study and participant information were abstracted from PRO validation studies. Racial and ethnic representation in U.S.-based studies were compared with U.S. census data. The primary outcome was the representation quotient of reported races and ethnicities, calculated as the reported percentage of the study population identifying with a race and/or ethnicity divided by the proportion of the U.S. population identifying with that race and/or ethnicity when the study was published. Forty-five studies with 21,080 total participants were included. Race was reported in 17 of 45 studies (37.8%), and ethnicity was reported in 7 of 45 (15.6%). Most studies did not specify how race and ethnicity information was collected. For U.S.-based studies, the representation quotient of White participants from 1995 to 2019 was 1.15. Indigenous American/Native American/American Indian/Alaska Natives had the lowest representation quotient (0.22). Reporting of ethnicity increased over time (P = 0.001), although there was no significant change in the reporting of race or the representation of various races and ethnicities (P > 0.05). Non-White and Hispanic patients may be underrepresented in U.S.-based validation studies for PRO instruments in pelvic floor disorders.