Health Care Transition Outcomes in Inflammatory Bowel Disease: A Multinational Delphi Study

Gertrude van den Brink, Martha A C van Gaalen, Lissy de Ridder, C Janneke van der Woude, Johanna C Escher, Gertrude van den Brink, Martha A C van Gaalen, Lissy de Ridder, C Janneke van der Woude, Johanna C Escher

Abstract

Background: Transition programmes are designed to prepare adolescent inflammatory bowel disease [IBD] patients for transfer to adult care. It is still unclear which outcome parameters define 'successful transition'. Therefore, this study aimed to identify outcomes important for success of transition in IBD.

Methods: A multinational Delphi study in patients, IBD nurses, and paediatric and adult gastroenterologists was conducted. In stage 1, panellists commented on an outcome list. In stage 2, the refined list was graded from 1 to 9 [least to very important], by an expert and a patient panel. In stage 3, the expert panel ranked important outcomes from 1 to 10 [least to most important]. Descriptive statistics and Mann-Whitney U-tests were performed.

Results: The final item list developed in stage 1 was tested by the expert [n = 74 participants, 52.7% paediatric] and patient panel [n = 61, aged 16-25 years, 49.2% male]. Respectively, ten and 11 items were found to be important by the expert and patient panel. Both panels agreed on eight of these items, of which six reflected self-management skills. In stage 3, the expert panel formed a top-ten list. The three most important items were: decision-making regarding IBD [mean score 6.7], independent communication [mean score 6.3] and patient satisfaction [mean score 5.8].

Conclusion: This is the first study identifying outcomes that IBD healthcare providers and patients deem important factors for successful transition. Self-management skills were considered more important than IBD-specific items. This is a first step to further define success of transition in IBD and subsequently evaluate the efficacy of different transition models.

Keywords: IBD; outcome; success; transfer; transition.

Copyright © 2019 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Figures

Figure 1.
Figure 1.
Flowchart composition Delphi panel.
Figure 2.
Figure 2.
Summary of stage 3 of the Delphi procedure. Note: panel A: italic, removed items; underlined, items not changed in stage 1. Panel B: bold items are those newly suggested. Panel C: §order of the items is based on the lowest [1] to highest [10] mean score [Table 3]. Panel D: ¥10 reflecting the most important, 1 the least important.

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Source: PubMed

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