*Purpose: Integration of patient reported outcome measures (PROMs) in routine clinical care reduces utilisation of health care services and improves patient outcomes. Electronic versions of PROMs enhance accessibility for stakeholders. Currently, there are no studies systematically evaluating measurement equivalence (ME) for pediatric PROMs adapted to e-versions. We utilized PRIMSA guidelines to conduct a systematic review to ascertain ME between self- and proxy- pen-and-paper versus e-versions of validated pediatric PROMs.

*Methods: A literature search was conducted through Medline, Embase, APA PsychInfo and the Cochrane Library. Inclusion criteria: 1) age of study cohort < 18 years; 2) administration of pen-and-paper and e- PROM versions; 3) presented numeric ME of questionnaire scores; 4) publication language in English. Each title, abstract and full manuscript were independently reviewed by two authors, followed by assessment of pre-determined study characteristics and results with discussion as needed towards consensus. Risk of bias was assessed using the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies.

*Results: A total of 18 studies evaluating 5566 (range 19-1071) children, studying generic (n=9, 50%) and disease-specific (n=9, 50%) PROMs, with both cross-over (n=14, 78%) and parallel group (n=4, 22%) designs were identified through database and targeted search. All authors reported measurement equivalence, however a-prior ME definitions were defined in only 9 (50%) studies. Intraclass correlation coefficient (ICC) was most common ME metric used (n=10, 56%), with all but one reporting an ICC > 0.70. Details on the pediatric PROM and the adaptation process to e-versions were provided in only two (11%) studies. Proxy-reported versions were available for 9 (50%) PROMs, with information on ME of e-proxy versions reported in six of 18 (33%) studies. Correlation between child and proxy reported versions were reported in one (6%) PROM. Participants user satisfaction surveys revealed preferences for the e-versions of pediatric PROMS.

*Conclusions: Studies of pediatric PROMs report equivalence between pen-paper and adapted e-versions, although limitations exist. These include absence of standardized a-priori ME definitions, sparse details about the adaptation process, and determination of ME on proxy-reported PROM versions often not done. Future directions include adaptation and ME determination of the disease specific Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire to an e-version, towards the goal of enhancing the voice of pediatric liver transplant recipients and their caregivers.

« Back to 2022 American Transplant Congress