EN
TÜRKÇE
Poster - 57
Usability and Effectiveness of the Pediatric Patient-Generated Index (pPGI) for Esophageal Atresia Follow-up: Insights from Children and Clinicians
Z Nafees*, J Ferreira*, E Guadagno**, N Ow***, N Mayo*, D Poenaru**, JM Laberge**
*McGill University, Montreal, Canada
**Montreal Children's Hospital, McGill University
***University of British Columbia, Canada
Purpose
The Patient-Generated Index (PGI), unlike standard patient-reported outcome measures (PROMs), is an individualized measure that enables patients to define their own quality of life (QoL) domains. This study examines the usability and effectiveness of the pediatric Patient-Generated Index (pPGI), a recently adapted version of the adult PGI, in capturing QoL outcomes specific to children who have undergone esophageal atresia (EA) repair. We aim to determine if the pPGI can effectively capture the unique experiences and priorities of these patients, complementing insights from established QoL measures.
Methods
This cross-sectional study analyzed three PROMs: the pPGI, the EuroQol-5D Youth (EQ-5D-Y), and the Patient-Reported Outcome Measurement Information System (PROMIS) Life Satisfaction Short Form-8a. Children (ages 0-17) with repaired EA completed all three measures. Cognitive interviews with children and their parents explored the pPGI’s completion process, while clinician interviews provided perspectives on EA outcome measures.
Results
Across 25 interviews with 45 child-parent dyads, the pPGI generated 104 text responses covering various QoL domains, with “looking after one’s health” emerging as the most common. Weak correlations were observed between pPGI scores and EQ-5D-Y (r = 0.33) and PROMIS (r = 0.19), reflecting the individualized nature of the pPGI. Cognitive interviews revealed generally positive feedback, with three of six clinicians preferring the pPGI.
Conclusion
The pPGI effectively captures individualized QoL domains for children post-EA repair, aligning with patient-defined priorities. Initial construct validity and positive feedback support its use in evaluating health-related QoL following pediatric surgery.