Retrospective Study
Copyright ©The Author(s) 2016. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Feb 28, 2016; 22(8): 2611-2620
Published online Feb 28, 2016. doi: 10.3748/wjg.v22.i8.2611
Outcomes and patients’ perspectives of transition from paediatric to adult care in inflammatory bowel disease
Alice L Bennett, David Moore, Peter A Bampton, Robert V Bryant, Jane M Andrews
Alice L Bennett, Robert V Bryant, Jane M Andrews, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia
Alice L Bennett, Peter A Bampton, Department of Gastroenterology, Flinders Medical Centre, Flinders Drive, Bedford Park, SA 5042, Australia
Alice L Bennett, Robert V Bryant, Jane M Andrews, School of Medicine, University of Adelaide, Adelaide, SA 5000, Australia
David Moore, Department of Gastroenterology, Women’s and Children’s Hospital, Adelaide, SA 5006, Australia
Peter A Bampton, Jane M Andrews, School of Medicine, Flinders University, Adelaide, SA 5001, Australia
Author contributions: Bennett AL and Andrews JM designed the research; Bennett AL performed the research; Andrews JM and Moore D supervised the research; Bennett AL collected the data; Bennett AL and Andrews JM analysed the data; Bennett AL wrote the paper; Moore D, Bampton PA, Bryant RV and Andrews JA revised the manuscript for important intellectual content; all authors have read and approved the final version to be published.
Supported by Alice Bennett received financial support during her research year from AbbVie.
Institutional review board statement: The study was approved by the Human Research Ethics Committees of the Women’s and Children’s Hospital Network Human Research Ethics Committee (project identification: HREC 12/WCHN/95), Royal Adelaide Hospital Research Ethics Committee (project identification: HREC/12/WCHN/95 SSA/13/RAH/79) and Southern Adelaide Clinical Human Research Ethics Committee (project identification: 195.13).
Informed consent statement: All study participants provided informed written consent prior to study enrolment.
Conflict-of-interest statement: Bennett AL has received grant funding from AbbVie to support part-salary and has presented at educational meetings for Abbvie, Janssen and Shire. Bampton PA has received research funding from Abbvie and Janssen; is on the advisory boards for Abbvie and Janssen and has presented at educational meetings for Abbvie, Janssen, Shire and Ferring. Andrews JA has received research funding from Abbvie, Janssen, Ferring, Abbott; is on the advisory boards for Abbvie, Janssen, Hospira, Takeda and Ferring and has presented at educational meetings for Shire, Janssen, Abbvie, Astrazeneca, Nycomed, FreseniusKabi, Aspen and Orphan For the remaining authors, none are declared.
Data sharing statement: Consent was not obtained for data sharing but the presented data are anonymised and the risk of identification is low.
Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Correspondence to: Dr. Alice L Bennett, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia. alicebennett14@hotmail.com
Telephone: +61-8-86361180 Fax: +61-8-86362614
Received: September 28, 2015
Peer-review started: September 29, 2015
First decision: November 5, 2015
Revised: November 30, 2015
Accepted: December 12, 2015
Article in press: December 14, 2015
Published online: February 28, 2016
Abstract

AIM: To describe the disease and psychosocial outcomes of an inflammatory bowel disease (IBD) transition cohort and their perspectives.

METHODS: Patients with IBD, aged > 18 years, who had moved from paediatric to adult care within 10 years were identified through IBD databases at three tertiary hospitals. Participants were surveyed regarding demographic and disease specific data and their perspectives on the transition process. Survey response data were compared to contemporaneously recorded information in paediatric service case notes. Data were compared to a similar age cohort who had never received paediatric IBD care and therefore who had not undergone a transition process.

RESULTS: There were 81 returned surveys from 46 transition and 35 non-transition patients. No statistically significant differences were found in disease burden, disease outcomes or adult roles and responsibilities between cohorts. Despite a high prevalence of mood disturbance (35%), there was a very low usage (5%) of psychological services in both cohorts. In the transition cohort, knowledge of their transition plan was reported by only 25/46 patients and the majority (54%) felt they were not strongly prepared. A high rate (78%) of discussion about work/study plans was recorded prior to transition, but a near complete absence of discussion regarding sex (8%), and other adult issues was recorded. Both cohorts agreed that their preferred method of future transition practices (of the options offered) was a shared clinic appointment with all key stakeholders.

CONCLUSION: Transition did not appear to adversely affect disease or psychosocial outcomes. Current transition care processes could be optimised, with better psychosocial preparation and agreed transition plans.

Keywords: Transition care, Crohn’s disease, Ulcerative colitis, Chronic illness, Inflammatory bowel disease, Patient perspectives, Disease outcomes

Core tip: Limited data exists regarding psychosocial and disease outcomes for inflammatory bowel disease patients following transition from paediatric to adult care and their perspectives on the process. Our study obtained this data through questionnaires and compared it to a matched cohort to see if the transition process itself influenced outcomes. We found that transition programs did not appear to adversely affect disease or psychosocial outcomes; however, patients have poor knowledge of their transition plan many are not strongly prepared. Current transition care practices could be optimised and this data contributes to a foundation on which future transition practices can be designed.