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

Area of Science:

• Pediatric Gastroenterology and Hepatology
• Transplantation Medicine
• Health Outcomes Research

Background:

• Patient-reported outcome measures (PROMs) are crucial for assessing pediatric health.
• Quantifying discrepancies between child and caretaker responses on PROMs is an emerging area.
• Liver transplantation outcomes require comprehensive evaluation beyond clinical markers.

Purpose of the Study:

• To introduce and evaluate a novel "discrepancy score" derived from caretaker vs. child PROMs.
• To assess the relationship between this discrepancy score and patient outcomes post-liver transplantation.
• To explore the clinical utility of quantifying PROM response differences.

Main Methods:

• A prospective cohort study enrolled 200 children (8-18 years) post-liver transplant and their caretakers.
• A novel electronic application calculated a "discrepancy score" based on annual differences in Health-Related Quality of Life (HRQoL) questionnaire responses.
• Liver function and HRQoL outcomes were concurrently evaluated.

Main Results:

• HRQoL was not significantly associated with liver transplant outcomes.
• A significant inverse correlation was observed between the discrepancy score and HRQoL at both first and second administrations (r=-0.469, P<.01 and r=-0.347, P<.01).
• This indicates that larger discrepancies between child and caretaker reports are linked to poorer HRQoL.

Conclusions:

• The "discrepancy score" offers a novel method for interpreting pediatric PROMs in transplantation.
• Reducing discrepancies between child and caretaker PROM responses may serve as a valuable clinical target.
• This approach could enhance the understanding and management of health-related quality of life in pediatric transplant patients.