Using multiple imputation of real-world data to estimate clinical remission in pediatric inflammatory bowel disease

Published February 2023

Nanhua Zhang, Chunyan Liu, Steven J Steiner, Richard B Colletti, Robert Baldassano, Shiran Chen, Stanley Cohen, Michael D Kappelman, Shehzad Saeed, Laurie S Conklin, Richard Strauss, Sheri Volger, Eileen King, and Kim Hung Lo

To evaluate the performance of the multiple imputation (MI) method for estimating clinical effectiveness in pediatric Crohn's disease in the ImproveCareNow registry; to address the analytical challenge of missing data.

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Practice Survey: Depression Screening in Pediatric Inflammatory Bowel Disease

Published February 2023

Maddux MH, Drovetta M, Mackner LM, Plevinski J, Whitaker BN

This study summarizes depression screening within IBD centers in the ImproveCareNow Collaborative Network.

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Use, Durability, and Risks for Discontinuation of Initial and Subsequent Biologics in a Large Pediatric-Onset IBD Cohort

Published February 2023

Kaplan JL, Liu C, King EC, Bass JA, Patel AS, Tung J, Chen S, Lissoos T, Candela N, Saeed S, Colletti RB

Biologic medications are recommended for treatment of moderately-to-severely active Crohn's disease (CD) or ulcerative colitis (UC) in children. However, many patients require sequential biologic treatment because of nonresponse or loss of response to the initial biologic.

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Biosimilars for Pediatric Patients with Inflammatory Bowel Disease: Pediatric Gastroenterology Clinical Practice Survey

Published February 2023

Maltz RM, McClinchie MG, Boyle BM, McNicol M, Morris GA, Crawford EC, Moses J, Kim SC.

The objective of this study was to evaluate the perspectives of pediatric gastroenterologists in the United States (U.S.) towards biosimilar use and to explore factors that impact their comfort level with prescribing infliximab biosimilars.

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Comparative Effectiveness of Anti-TNF in Combination with Low Dose Methotrexate vs Anti-TNF Monotherapy in Pediatric Crohn's Disease: a Pragmatic Randomized Trial

Published March 2023

Kappelman MD, Wohl DA, Herfarth HH, Firestine AM, Adler J, Ammoury RF, Aronow JE, Bass DM, Bass JA, Benkov K, Berenblum Tobi C, Boccieri ME, Boyle BM, Brinkman WB, Cabera JM, Chun K, Colletti RB, Dodds CM, Dorsey JM, Ebach DR, Entrena E, Forrest CB, Galanko JA, Grunow JE, Gulati AS, Ivanova A, Jester TW, Kaplan JL, Kugathasan S, Kusek ME, Leibowitz IH, Linville TM, Lipstein EA, Margolis PA, Minar P, Molle Rios Z, Moses J, Olano KK, Osaba L, Palomo PJ, Pappa H, Park KT, Pashankar DS, Pitch L, Robinson M, Samson CM, Sandberg KC, Schuchard JR, Seid M, Shelly KA, Steiner SJ, Strople JA, Sullivan JS, Tung J, Wali P, Zikry M, Weinberger M, Saeed SA, Bousvaros A.

Tumor Necrosis Factor inhibitors (TNFi), including infliximab and adalimumab, are a mainstay of pediatric Crohn's disease (PCD) therapy; however, non-response and loss of response is common. As combination therapy with methotrexate may improve response, we performed a multi-center, randomized, double-blind, placebo-controlled pragmatic trial to compare TNFi with oral methotrexate to TNFi monotherapy.

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Pediatric GI Health Care Professionals’ Perceptions of and Engagement With Psychosocial Providers in Pediatric IBD Care

Published April 2023

David, Jennie G. PhD, Sejkora, Ellen PhD, Michel, Hilary K. MD, Mackner, Laura PhD

Multidisciplinary care is recommended for optimal pediatric inflammatory bowel disease (IBD) care, including psychosocial providers (eg, psychologists). However, health care professionals’ (HCPs) perceptions of and engagement with psychosocial providers in pediatric IBD is lacking.

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Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks

Published June 2023

Madeleine Huwe, Becky Woolf, Jennie David, Michael Seid, Shehzad Saeed, Peter Margolis

Patient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means—and what successful patient engagement means—are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs.

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Variability of Psychosocial Services Within the ImproveCareNow Learning Health System: Opportunities for Optimization

Published November 2023

Winnick, Joel B. PhD, ABPP; Jacobs, Noel PhD; David, Jennie G. PhD; Moua, Mai Ku MSW; Saeed, Shehzad A. MD, FAAP, AGAF

Known to be significantly disruptive to normative social development and quality of life, pediatric IBD significantly increases the risk of internalizing distress and secondary developmental sequelae. While multidisciplinary support including psychosocial care (from social workers and pediatric psychologists) is growing, this evidence-based and beneficial set of services is not universally available to youth with IBD. In a survey sent to the more than 100 established ICN centers, psychosocial providers attempted to identify the coverage and practice scope of psychosocial providers within the network.

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