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International Journal of Hepatology
Volume 2015, Article ID 765957, 9 pages
Research Article

Growing Up: Not an Easy Transition—Perspectives of Patients and Parents regarding Transfer from a Pediatric Liver Transplant Center to Adult Care

1Department of Biomedical Engineering, Georgia Institute of Technology, Atlanta, GA 30332, USA
2Children’s Healthcare of Atlanta, Transplant Services, Atlanta, GA 30322, USA
3Department of Pediatrics, Emory University School of Medicine, Health Science Research Building (HSRB), Suite No. E200, Office No. 216, Atlanta, GA 30322, USA

Received 10 August 2015; Revised 19 October 2015; Accepted 19 October 2015

Academic Editor: Daisuke Morioka

Copyright © 2015 Sona Chandra et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.


The transition from pediatric to adult care is a critical time when children with chronic illness sustain high morbidity and mortality. Transition services need to be focused on the adolescents’ needs, which may differ from those perceived by healthcare providers. In this study, a survey of 31 patients with chronic liver disease and/or liver transplant who were “transferred” to adult services within the last 3 years was conducted. Patients were asked about their current health status and their perceptions of the overall transfer process. The mean age at transfer was 19.81 (18–21) years. Almost half the patients (47%) were not seen at the adult facility until 2–6 months after leaving the Children’s hospital and 20% were not seen until 6–12 months. About 20% had their first contact with adult services through an emergency room visit. About 19% reported being out of medication during transition. Of the transplanted patients, 19% were being evaluated for a retransplant. The majority (82%) felt that an increased emphasis on promoting independence and “letting go” both by parents and by pediatric care providers was critical in their transition to independence and adult care services. This study provides thought-provoking insights, which are critical in designing the ideal transition program for children with chronic diseases.