Patient-Caregiver Discrepancy Score: Multisite Evaluation of a Novel Pediatric Outcome Measure - 16/02/26

Doi : 10.1016/j.jpeds.2025.114900

Eyal Shemesh, MD ^1,^⁎ , Vicky L. Ng, MD ², Claire Dunphy, PhD ¹, Sherrie Logan, MPH ³, Julie Chessell, RN ³, Nehal Swami, BASc ⁴, Steven J. Lobritto, MD ⁵, Nitika A. Gupta, MD ⁶, Emily R. Perito, MD ⁷, Evelyn K. Hsu, MD ⁸, Daniel Pieratt, MPA ⁹, Karina Kwan, MSc ², Cristien DeGroote, BSc ¹, Srinivasan Suresh, MD, MBA ⁹, Ravinder Anand, PhD ¹⁰, Sarah Grace Anderson, MSc ¹⁰, Nora Mueller, PhD ¹¹, Lawrence C. Kleinman, MD, MPH ¹², George V. Mazariegos, MD ⁹

¹ Icahn School of Medicine at Mount Sinai, Mount Sinai Kravis Children's Hospital, New York, NY

² The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

³ Patient and Family Voice, Starzl Network for Excellence in Pediatric Transplantation, Pittsburgh, PA

⁴ RealTime Clinic, Dallas, TX

⁵ Columbia University Medical Center, Morgan Stanley Children's Hospital of New York, New York, NY

⁶ Children's Healthcare of Atlanta and Emory University School of Medicine, Atlanta, GA

⁷ UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA

⁸ Seattle Children's Hospital, University of Washington School of Medicine, Seattle, WA

⁹ UPMC Children's Hospital of Pittsburgh and University of Pittsburgh, Pittsburgh, PA

¹⁰ Emmes Company, LLC, Rockville, MD

¹¹ Agency for Healthcare Research and Quality, Center for Evidence and Practice Improvement, Rockville, MD

¹² Bristol Myers Squibb Children's Hospital and Rutgers Robert Wood Johnson Medical School, Rutgers School of Public Health, New Brunswick, NJ

^∗ Reprint requests: Eyal Shemesh, MD, Department of Pediatrics, Icahn School of Medicine at Mount Sinai, Kravis Children's Hospital, 1 Gustave L Levy Place, 10029, New York, NY. Department of Pediatrics Icahn School of Medicine at Mount Sinai Kravis Children's Hospital 1 Gustave L Levy Place New York NY 10029

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 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.

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, 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.

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.

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Keywords : patient-reported outcomes, pediatric transplant, quality of life

Abbreviations : ALT, GGT, HRQoL, MLVI, PeLTQL, PROM, SNEPT

Plan

Biochemical and Adherence Outcome Measures

Data Sources/Measurement

Descriptive Outcome Data

Main Results

“Of Concern” Ranges and Directional Analyses

Discussion

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Vol 290

Article 114900- mars 2026 Retour au numéro

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Patient-Caregiver Discrepancy Score: Multisite Evaluation of a Novel Pediatric Outcome Measure - 16/02/26

Abstract

Objective

Study design

Results

Conclusions

Plan

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