Alagille Syndrome
Conference Roundup

Paper vs Electronic: Is there equivalence for pediatric PROMS after transplantation?

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Although equivalence has been shown for paper patient-reported outcome measures (PROMs) adapted to an electronic version in adult solid-organ transplant recipients, additional research is needed to establish a clear definition of equivalence in pediatric patients, according to a poster presented at the 2021 SPLIT Annual Meeting.

This study analyzed 11 articles published from 2003 to 2020. All included studies reported equivalency, most determined by intraclass correlation (ICC). None of the studies included organ failure or transplant. Studies had varying participation, ranging from 19 to 713 participants, with the majority being ≥8 years old. Overall, 45% of studies included disease-specific PROMs. A correlation between child and parent-proxy reporting was noted in 1 study.

E-versions were done by computer (n = 7), smartphone (n = 2), and tablet (n = 3).

When adapting PROMs for pediatrics, providing sufficient evidence for measurement equivalency is difficult due to an unclear degree of adaptation, minimal proxy reporting, varying definitions of equivalency, and a lack of studies in children with organ failure or transplant.

The authors concluded that additional databases would need to be searched to expand on this preliminary review and that equivalency testing should be done for a novel mobile-app version of The Pediatric Liver Transplant Quality of Life questionnaire.

Kortbeek S, et al. Equivalence of pediatric paper and electronic-based patient-reported outcome measures: Findings from a systematic review. Presented at: The Society of Pediatric Liver Transplantation (SPLIT) Annual Meeting; September 30–October 1, 2021.