Patient experience or patient satisfaction? A systematic review of child- and family-reported experience measures in pediatric surgery

Purpose: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly recognized as important health care quality indicators. PREMs measure patients' perception of the care they have received, differing from satisfaction ratings, which measure their expectations. The use of PREMs in pediatric surgery is limited, prompting this systematic review to assess their characteristics and identify areas for improvement. Methods: A search was conducted in eight databases from inception until January 12, 2022, to identify PREMs used with pediatric surgical patients, with no language restrictions. We focused on studies of patient experience but also included studies that assessed satisfaction and sampled experience domains. The quality of the included studies was appraised using the Mixed Methods Appraisal Tool. Results: Following title and abstract screening of 2633 studies, 51 were included for full-text review, of which 22 were subsequently excluded because they measured only patient satisfaction rather than experience, and 14 were excluded for a range of other reasons. Out of the 15 included studies, questionnaires used in 12 studies were proxy-reported by parents and in 3 by both parents and children; none focused only on the child. Most instruments were developed in-house for each specific study, without patients' involvement in the process, and were not validated. Conclusions: Although PROMs are increasingly used in pediatric surgery, PREMs are not yet in use, being typically substituted by satisfaction surveys. Significant efforts are needed to develop and implement PREMs in pediatric surgical care, in order to effectively capture children's and families' voices. Level of evidence: IV (c) 2023 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).