Patient-Caregiver Discrepancy Score: Multisite Evaluation of a Novel Pediatric Outcome Measure.

Abstract

To evaluate the relationship between patient outcomes and a discrepancy score, a new way to quantify caretaker vs child discrepancies on patient-reported outcome measures (PROMs). Children aged between 8 and 18 years, at least 1 year from a primary liver transplantation, and their primary adult caretaker were recruited in a prospective, hypothesis-driven cohort study conducted in 7 centers (USA, Canada) from the Starzl Network for Excellence in Pediatric Transplantation. A novel electronic application computed a "discrepancy score": the absolute cumulative value of each year's difference in scores between child and caretaker responses on a Health-Related Quality of Life (HRQoL) questionnaire. Liver and HRQoL outcomes were also evaluated. Of 200 enrolled, 160 patients/140 dyads answered the questionnaire at least once; 101 patients/85 dyads answered twice. Median age was 13 years, and 60.6% were females. HRQoL was not associated with liver outcomes but was associated with discrepancy scores in both the first and second administration: Pearson correlation -0.469 (95% confidence interval: -0.588, -0.328, P < .01) and -0.347 (95% confidence interval: -0.520, -0.143, P < .01), respectively. Quantifying differences between child and caretaker PROMs in a "discrepancy score" is a novel way to interpret PROM results. Decreasing discrepancies could be a reasonable clinical target.