Capturing Patient-Centered Quality of Life: Usability and Initial Validation of the Pediatric Patient-Generated Index Following Esophageal Atresia Repair

Zanib Nafees, Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, CanadaFollow
Julia Ferreira, Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada AND Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada Follow
Elena Guadagno, Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, CanadaFollow
Nikki Ow, Occupational Science and Occupational Therapy, Faculty of Medicine, The University of British ColumbiaFollow
Nancy Mayo, School of Physical & Occupational Therapy, James McGill Professor, McGill University Health CentreFollow
Jean-Martin Laberge, Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada AND Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada Follow
Dan Poenaru, Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada AND Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada Follow

ORCID

Zanib Nafees: https://orcid.org/0000-0003-1291-2050

Abstract

The Patient-Generated Index (PGI) is an individualized measure that allows patients to define the domains most important to their quality of life (QoL). This study evaluates the usability and preliminary validity of the pediatric Patient-Generated Index (pPGI) in children who previously underwent esophageal atresia (EA) repair. We conducted a mixed-methods study including the pPGI, EuroQol-5D-Youth (EQ-5D-Y), and PROMIS Life Satisfaction Short Form-8a. Children aged 7–17 years completed self-reports, while parents served as proxies for younger children. Cognitive interviews explored how children understood and completed the pPGI, and clinician interviews assessed clinical usability. Among 25 participants, the pPGI generated 104 text responses covering a wide range of individualized domains, with eating, respiratory concerns, school impacts, and ``looking after one's health'' emerging most frequently. Weak correlations were observed between pPGI scores and both EQ-5D-Y (r = 0.33) and PROMIS (r = 0.19), consistent with the individualized nature of the measure. Cognitive interviews highlighted overall ease of understanding but identified challenges with the coin-distribution (weighting) step. Clinicians valued the pPGI for its specificity to EA-related concerns, though some preferred standardized measures for quantification. The pPGI demonstrated initial construct validity and strong acceptability, providing nuanced insights not captured by generic or disease-specific tools. These findings support the potential of the pPGI as a complementary, patient-centered measure for long-term EA follow-up.

Recommended Citation

Nafees Z, Ferreira J, Guadagno E, Ow N, Mayo N, Laberge J, Poenaru D. Capturing Patient-Centered Quality of Life: Usability and Initial Validation of the Pediatric Patient-Generated Index Following Esophageal Atresia Repair. Patient Experience Journal. 2026; 13(1):43-56. doi: 10.35680/2372-0247.2088.