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

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 patie...

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Bibliographic Details
Published in:International Journal of Hepatology 2015-01, Vol.2015 (2015), p.48-56
Main Authors: Gupta, Nitika Arora, Romero, Rene, Luetkemeyer, Shannon, Chandra, Sona
Format: Article
Language:English
Subjects:
Analysis
Caregivers
Chronic illnesses
Education
Emergency medical services
Health aspects
Hospitals
Liver
Liver diseases
Liver transplants
Management
Parents & parenting
Patient compliance
Patients
Pediatrics
Polls & surveys
Transplantation
Transplants & implants
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Summary: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.
ISSN:2090-3448
2090-3456
DOI:10.1155/2015/765957