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Related Experiment Videos

Emmanuelle Barsky1

  • 1Soins Pédiatrie-Puériculture, Elsevier Masson, 92442 Issy-les-Moulineaux cedex, France.

Soins. Pediatrie, Puericulture
|July 15, 2017
PubMed
Summary
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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.
Keywords:
adult servicescongenital liver fibrosisencéphalopathie hépatiquefibrose hépatique congénitalegreffehepatic encephalopathypaediatricspédiatrieservice d’adultestransitiontransplant

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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.