Transition from paediatric to adult service in epidermolysis bullosa

Area of Science:

• Pediatric Healthcare
• Adult Healthcare Transition
• Chronic Disease Management

Background:

• Increasing lifespan of children with chronic health needs leads to complex adult health requirements.
• Healthcare systems face challenges in managing the transfer of young adults from pediatric to adult care settings.
• Effective transitional care models are crucial for this growing patient population.

Purpose of the Study:

• To describe transitional care arrangements for children with severe epidermolysis bullosa at Great Ormond Street Hospital.
• To highlight the importance of interdisciplinary collaboration during patient transfer.
• To address the psychological impact of transitioning to adult care on young adults and their families.

Main Methods:

• Establishing close liaison between pediatric and adult clinical nurse specialists.
• Involving families in the transitional care planning process.
• Documenting the established transitional care model for severe epidermolysis bullosa patients.

Main Results:

• Successful implementation of a structured transitional care program at Great Ormond Street Hospital.
• Enhanced communication and collaboration between pediatric and adult care teams.
• Recognition of the family's role in supporting young adults through the transition.

Conclusions:

• Transitional care for young adults with severe epidermolysis bullosa requires a multidisciplinary approach.
• Ongoing collaboration between young adults, specialist teams, and families is essential for successful long-term care.
• The developed model provides a framework for future generations navigating healthcare transitions.