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

Sona Chandra,Nitika Arora Gupta,Rene Romero,Shannon Luetkemeyer

doi:10.1155/2015/765957

Abstract

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.

Highlights

With improved outcomes of postliver transplantation, a large number of pediatric liver transplant recipients are reaching adulthood [1]
The posttransplantation five-year graft/survival rate for pediatric liver transplant recipients currently ranges from 67% to 82% [2, 3]
There are a number of barriers that a young adult transplant patient faces, with the most important one being the development of a sense of autonomy and independence [6]

Summary

Introduction

With improved outcomes of postliver transplantation, a large number of pediatric liver transplant recipients are reaching adulthood [1]. The need to prepare pediatric liver transplant recipients for the transfer to adult-centered transplant care has increasingly become an important area of investigation. There are a number of barriers that a young adult transplant patient faces, with the most important one being the development of a sense of autonomy and independence [6]. The suggested level of autonomy before transferring to adult care includes the patient’s adequate demonstration of knowledge of the disease and transplant as well as a thorough understanding of the impact on his or her overall health [2]. A fully independent, self-governing, and autonomous adult patient at the time of transfer is a common goal of pediatric healthcare providers

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Conclusion