Shapiro JM¹, El-Serag HB², Gandle C³, Peacock C³, Denson L⁴, Fishman L⁵, Hernaez RL², Hou J². Clin Gastroenterol Hepatol. 2019 May 8. pii: S1542-3565(19)30495-1. doi: 10.1016/j.cgh.2019.04.063. [Epub ahead of print]

Author information

1 Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety (IQuESt), Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas. Electronic address: jmshapir@bcm.edu.

2 Department of Medicine, Baylor College of Medicine, Houston, Texas; Center for Innovations in Quality, Effectiveness and Safety (IQuESt), Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas.

3 Department of Medicine, Baylor College of Medicine, Houston, Texas.

4 Division of Pediatric Gastroenterology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

5 Division of Pediatric Gastroenterology, Boston Children's Hospital, Boston, MA.

Abstract

Adolescents and young adults diagnosed with inflammatory bowel diseases (IBD) in pediatric care are vulnerable during their transition to adult care. There are 6 core elements of transition from pediatric to adult IBD care. We identified gaps in this transition and make recommendations for clinical practice and research. There have been few studies of transition policy (core element 1) or studies that tracked and monitored patients through the transition (core element 2). Several studies have assessed transition readiness (core element 3), but instruments for assessment were not validated using important outcomes such as disease control, healthcare use, adherence, quality of life, or continuity of care. There have been no studies of best practices for transition planning (core element 4), including how to best educate patients and facilitate gradual shifts in responsibility. A small number of longitudinal studies have investigated transfer of care (core element 5) but these were conducted outside of the United States; these studies found mixed results in short- and intermediate-term outcomes after transition completion (core element 6). We discuss what is known about the transition from pediatric to adult care for IBD, make recommendations to improve this process, and identify areas for additional research.