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1Soins Pédiatrie-Puériculture, Elsevier Masson, 92442 Issy-les-Moulineaux cedex, France.
Insights
This case study follows Yakub's journey with congenital liver fibrosis and polycystic kidney disease, highlighting his transition to adult care for a liver transplant. It emphasizes the importance of preparing young patients and families for this critical move to adult hepatology services.
Area of Science:
- Pediatric Hepatology
- Transplant Surgery
Context:
- Yakub was diagnosed with congenital liver fibrosis and polycystic kidney disease in infancy.
- He required regular monitoring and multiple hospital readmissions due to complications.
- At 15, he awaits a liver transplant and is transitioning to adult hepatology care.
Purpose:
- To describe the patient experience of transitioning from pediatric to adult care for chronic liver and kidney diseases.
- To illustrate the process of preparing a young patient and their family for transfer to adult services.
Summary:
- The narrative details Yakub's long-term management of severe pediatric liver and kidney conditions.
- It highlights the planned transition to adult hepatology services in preparation for a liver transplant.
- The account emphasizes the collaborative approach involving Yakub, his family, and healthcare providers.
Impact:
- Provides insights into the psychosocial aspects of managing chronic pediatric diseases into adulthood.
- Underscores the necessity of structured transition programs for patients with chronic conditions.
- Offers a patient-centered perspective on navigating complex healthcare systems for organ transplantation.
Abstract:
"THE PAEDIATRICS DEPARTMENT WAS OUR SECOND HOME".: At the age of a few months, Yakub was diagnosed with congenital liver fibrosis then polycystic kidney disease. He has been monitored regularly since then, and has had to be readmitted on several occasions due to complications. Now, aged 15, he is waiting for a liver transplant and is under the care of the adult hepatology department. The transition from paediatrics to the adult services was prepared, in advance, with him and his family. Yakub and his mother's account.