Patient-Caregiver Discrepancy Score: Multisite Evaluation of a Novel Pediatric Outcome Measure
11/2025
Journal Article
Authors:
Shemesh, E.;
Ng, V. L.;
Dunphy, C.;
Logan, S. ;
Chessell, J.;
Swami, N.;
Lobritto, S. J.;
Gupta, N. A.;
Perito, E. R.;
Hsu, E. K.;
Pieratt, D.;
Kwan, K.;
DeGroote, C.;
Srinivasan, S.;
Anand, R.;
Anderson, S. G.;
Mueller, N.;
Kleinman, L. C.;
Mazariegos, G. V.
Journal:
J Pediatr
PMID:
41242693
URL:
https://www.ncbi.nlm.nih.gov/pubmed/41242693
DOI:
10.1016/j.jpeds.2025.114900
Keywords:
patient reported outcome measures PROMs Children Transplantation Liver
Abstract:
OBJECTIVE: 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). STUDY DESIGN: Children between 8-18 years of age, at least one year from a primary liver transplantation, and their primary adult caretaker were recruited in a prospective, hypothesis-driven cohort study conducted in seven centers (USA, Canada) from the Starzl Network for Excellence in Pediatric Transplantation. A novel electronic application ("app") 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. RESULTS: Of 200 enrolled, 160 patients / 140 dyads answered the questionnaire at least once; 101 patients / 85 dyads answered twice. Median age was 13 years old, 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% CI: -0.588, -0.328, p<0.01), and -0.347 (95% CI: -0.520, -0.143, p<0.01), respectively. CONCLUSIONS: 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.