Retrospective Study
Copyright ©The Author(s) 2017. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Apr 7, 2017; 23(13): 2365-2375
Published online Apr 7, 2017. doi: 10.3748/wjg.v23.i13.2365
Transition after pediatric liver transplantation - Perceptions of adults, adolescents and parents
Norman Junge, Katarina Migal, Imeke Goldschmidt, Ulrich Baumann
Norman Junge, Katarina Migal, Imeke Goldschmidt, Ulrich Baumann, Department of Pediatric Gastroenterology and Hepatology, Hannover Medical School, 30625 Hannover, Germany
Author contributions: Junge N designed, performed and coordinated the research, analyzed and interpreted the data and wrote the initial manuscript; Migal K contributed to the data acquisition and performed statistical analysis of the data; Goldschmidt I critically revised the manuscript and contributed important intellectual content; Baumann U supervised the conception, design and analysis of the study and critically revised the manuscript.
Institutional review board statement: This study was reviewed and approved by the Hannover Medical School Institutional Review Board.
Informed consent statement: Patients and Parents received an information letter with the questionnaire. The also informed them about the scientific analysis that would be performed on provided responses. The patients and parents have responded freely to the questionnaire. As a result of an anonymous analysis of clinical data, Patients and Parents were not required to provide informed consent to participate in the study.
Conflict-of-interest statement: We have no conflict of interest or financial relationship related to the disclosure.
Data sharing statement: No additional data are available.
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: Norman Junge, MD, Department of Pediatric Gastroenterology and Hepatology, Hannover Medical School, Carl- Neuberg-Str 1, 30625 Hannover, Germany. junge.norman@mh-hannover.de
Telephone: +49-511-5323233 Fax: +49-511-5323294
Received: November 22, 2016
Peer-review started: November 25, 2016
First decision: December 19, 2016
Revised: January 18, 2017
Accepted: March 15, 2017
Article in press: March 15, 2017
Published online: April 7, 2017
Processing time: 134 Days and 20.2 Hours
Abstract
AIM

To develop a locally adapted, patient-focused transition-program, we evaluated the perceptions of adult and adolescent patients and parents regarding transition-programs and transfer.

METHODS

We evaluated these perceptions by analyzing the responses of pre-transfer adolescents (n = 57), their parents (n = 57) and post-transfer adults (n = 138) from a cohort of pediatric-liver-transplant-patients using a self-designed questionnaire. Furthermore, we compared a responder group with a non-responder group as well as the provided answers with baseline characteristics and clinical outcomes to exclude selection bias, characterize high-risk patients for non-adherence and test for gender differences. Included in our study were all pre-transfer liver transplant and combined liver-kidney transplant recipients aged 11-19 currently under our care and their parents, as well as all post-transfer liver transplant and combined liver-kidney transplant recipients aged ≥ 17 years who had received a liver transplant and were treated at our center during childhood.

RESULTS

Fifty-seven (24 female) pre-transfer patients who received a transplant in the previous 8-186 mo (mean 93.9 mo, median 92 mo, SD 53.8 mo) and 138 (57 female) post-transfer patients who received a transplant in the preceding 2-29 years (mean 15.6 years, median 17, SD 6.90) met the inclusion criteria. A total of 67% of pre-transfer patients (71% of female; 64% of male; P = 0.78) and their parents replied. Additionally, 54% of post-transfer patients (26% of female; 48% of male; P = 0.01) replied. No differences in clinical outcomes were observed between the responder and non-responder groups, and responses did not differ significantly based on clinical complication rates, although they did differ based on gender and the location of medical follow-up after transfer. Adolescents were generally ambivalent toward transition programs. However, adults strongly supported transition programs.

CONCLUSION

Transition programs need to be developed in close collaboration with adolescents. The best clinical practices regarding transition should respect local circumstances, gender and the location of post-transfer medical follow-up.

Keywords: Pediatric liver transplant; Transfer; Transition; Non-adherence; Gender differences

Core tip: This was a retrospective study that evaluated the perceptions of adult and adolescent patients and their parents for transition programs as well as for the completed transition and transfer process. Furthermore, we compared a responder group with a non-responder group as well as the provided answers with baseline characteristics and clinical outcomes to exclude selection bias, characterize high-risk patients for non-adherence and test for gender differences. No differences in clinical outcomes were observed between the responder and non-responder groups. Responses differed significantly based on gender and the location of medical follow-up post-transfer. Adolescents were ambivalent toward transition programs. Adults strongly support them.