Narrative review
Recommendations for Successful Transition of Adolescents With Inflammatory Bowel Diseases to Adult Care

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Adolescents and young adults diagnosed with inflammatory bowel diseases (IBDs) 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, health care 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.

Section snippets

Results

A total of 38 studies with 7631 subjects met the eligibility criteria (Table 2). Subjects included 6314 patients (1914 pretransition, 3747 post-transition, 27 undergoing transition, and 626 adult-onset IBD), 334 parents of patients with IBD, 282 pediatric gastroenterologists, 461 adult gastroenterologists, 88 gastroenterologists not specified, 138 nurses, 2 psychologists, 1 nurse practitioner, 1 social worker, 1 administrator, and 9 unspecified. Seven of 38 studies (18.4%) had comparison groups

Discussion

The existing IBD transition literature has gone to great lengths to provide meaningful perspectives from patients, parents, and providers regarding concerns about the transition process and transfer of care. Despite continued growth in that literature, our study showed key research gaps. Transition readiness is the most frequently addressed of the Six Core Elements of Transition; however, it has been assessed heterogeneously with multiple different instruments. Moreover, none of the existing

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    Conflicts of interest This author discloses the following: Jason Hou has served as a speaker for AbbVie, Janssen, and Pfizer, has consulted for AbbVie, has served on advisory boards for Pfizer, AbbVie, and Janssen, and has received research funding from AbbVie, Janssen, Pfizer, Celgene, Genentech, Redhill Biopharma, and Eli-Lilly. The remaining authors disclose no conflicts.

    Funding Jordan M. Shapiro is supported by a National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Institutional National Service Award (T32) from the National Institutes of Health under Award Number 5T32DK083266-09.

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