Equivalence of Paper and Electronic-Based Patient Reported Outcome Measures for Children: A Systematic Review

Abstract

Patient-reported outcome measures (PROMs) exist for a variety of chronic gastrointestinal disorders in children. The availability of electronic (e-)formats of PROMs enhance the accessibility of these tools. The International Society for Pharmacoeconomic and Outcomes Research (ISPOR) defines measurement equivalence (ME) as “comparability of the psychometric properties of data” obtained from the administration of original and adapted versions of PROMs. Consideration of proxy PROM versions is unique to pediatrics and must be included in ME evaluations. We conducted a systematic review (SR) of the literature evaluating ME of e-versions adapted from pediatric paper-based PROMs. A literature search was conducted through Medline, Embase, APA PsychInfo, and the Cochrane Library. Titles, abstracts, and manuscripts were reviewed by 2 independent reviewers. The search yielded 19 studies meeting pre-defined criteria. Just over half (52.6%) of 19 PROMs were disease-specific ones. ME between paper- and e-PROM versions was reported as present in all 19 studies evaluating 5653 participants under the age of 18 years. However, only 6 (31.6%) studies evaluated ME in proxy reported e-versions. Despite the use of PROMs for children with a variety of chronic gastrointestinal disorders, only 1 study evaluated a PROM in this population (IMPACT III for inflammatory bowel disease). Findings from this SR highlight strategic opportunities for the pediatric gastroenterologist to broaden the clinical and research armamentarium to include e-PROMs.

Equivalence of the adapted electronic Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire: A patient-reported outcome measure for children and teens

“…3,4 T A B L E 1 Mean scores and agreement between tablet and paper-based versions of the PeLTQL total and subdomain scores : ICC, intraclass correlation coefficient; PeLTQL, Pediatric Liver Transplant Quality of Life questionnaire.…”

“…[3] Despite these recommendations, in a recent systematic review evaluating ME of pediatric PROMs, fewer than a third of included studies reported ME data on both self and proxy-reported versions. [4] Children who have undergone liver transplantation (LT) transition through multiple phases of the medical journey, ultimately to a chronic management phase aimed at sustaining long-term allograft function, minimizing the sequelae of long-term immune suppression, and maximizing other aspects of health and wellness. PROM utilization would thereby provide key insights on patient perspectives to complement life-long medical surveillance.…”

“…Measurement equivalence (ME) is defined as comparable psychometric properties of data obtained from the original pen-paper and the adapted e-PROM versions, 3 and guidelines for demonstrating ME have been published by the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) 3 . Despite these recommendations, in a recent systematic review evaluating ME of pediatric PROMs, fewer than a third of included studies reported ME data on both self and proxy-reported versions 4 …”