Enrollment disparities in the PCPLC's patient-reported outcome measures (PROMs) study

Patient-reported outcomes have become an important metric for assessing quality of life and long-term clinical status. The Pediatric Colorectal and Pelvic Learning Consortium (PCPLC) evaluates the quality of life of patients with congenital colorectal diagnoses through the PCPLC Patient (and Parent) Reported Outcome Measures (PROMs) study. We sought to identify how socioeconomic disparities affect the enrollment rates of our patient population in the PROMs study.

A multicenter, retrospective study of children evaluated at sites participating in the PCPLC PROMs study was performed. We evaluated associations of the participants' demographic information with screening, enrollment, and consent for the PROMs study.

Of the 3505 participants enrolled in the PCPLC, 724 patients were eligible for the study. Demographics and enrollment practices varied by site. Hispanic ethnicity (p = 0.015) and public insurance (p = 0.013) were independently associated with lower enrollment, stratifying by site. Race was not independently associated with enrollment.

These results suggest that enrollment of participants into the PROMs study may be preferential for certain demographic groups, regardless of PCPLC site location and independent of demographic composition at each site. Further investigation is needed to develop strategies to ensure equitable screening and enrollment.