Patient-reported outcome measures in pediatric surgery - A systematic review.

Purpose: With improved long-term survival rates, measuring the quality of surgical care has gradually shifted from clinical morbidity and mortality to patient-reported outcome measures (PROMs). Since the use of PROMs in pediatric surgery is still limited, we undertook a study to identify current PROMs, assess their characteristics, and identify gaps and areas for improvement.

Methods: A search was conducted in eight databases from their inception until May 2021 to identify PROMs that have been used in pediatric surgical patients. PRISMA standards were followed, and screening was completed by two independent reviewers. The quality of the included studies was appraised using the AXIS and the Mixed Methods Appraisal Tool.

Results: Of 8282 studies screened, 101 articles met the inclusion criteria. Most of the studies (99%) were cross-sectional. We identified 85 different PROMs among the studies, 53 being disease-specific and the rest generic. The PedsQL™ was the most frequently used tool (42 studies). Almost half of the instruments (41 studies) were not validated, and 28% were developed ad hoc for each specific study. Significantly, all PROMs encountered were standardized (consisting of pre-determined domains), with no individualized tools currently in use. The overall quality of the included studies was good.

Conclusions: PROMs are increasingly used in pediatric surgery. Disease-specific PROMs predominate the field, yet validated and especially individualized PROMs are notably absent. Future efforts are needed to develop robust tools that reflect individual patient and family needs, preferences, and values, with the aim of furthering family-centered pediatric surgical care.