Children with intestinal failure and transplant have complicated past medical histories and complex care needs that can be difficult to manage, particularly during times of transition. Development of strategies to support patients and families during times of transition can facilitate care coordination and prevent complications related to gaps in care.
Learning Objectives
Discuss challenges that present in children with intestinal failure during transition
Review case study in related transition in care for pediatric to adult that created challenges and approaches to overcome these unique difficulties
Determine potential interventions and supports that could support transition for children with intestinal failure/transplantations from the perspective of a multidisciplinary team.
Principal Specialist Nurse - Hepatology and Transplantation
Birmingham Women's and Children's Hospital
Lindsay is the Principal Specialist Nurse in Hepatology and Transplantation. She has extensive experience in liver and intestine transplantation from pre-transplant assessment through transition to adult care. Her primary area of interest is in supporting families of children and young people with chronic illness. Providing accessible
information along with practical and emotional support.
Clinical Assistant Professor of Surgery
Clinical Nurse Specialist, Liver and Intestine Transplant
Transition Program Specialist, MyPATH
Department of Transplant Surgery
UPMC Children’s Hospital of Pittsburgh
Dr. Beverly Kosmach-Park is the Clinical Nurse Specialist in Transplant Surgery at Children’s Hospital of Pittsburgh, working with patients and families throughout the transplant process from evaluation to transition to adult care. As Transition Program Specialist for MyPATH, a program for adolescent liver and intestine recipients, she collaborates with the multidisciplinary team to help youth prepare for transfer to adult providers. Beverly is an active AST member and has served on the Executive Committee for the Pediatric Community of Practice chairing a task force that designed the AST Transition Toolkit and launched the Transition Portal. She was a board member of the International Transplant Nurses Society (ITNS) for 9 years, serving as President and Education Director and is currently a council member of the Intestinal Rehabilitation and Transplant Association. Beverly is a Fellow in the American Academy of Nursing (FAAN) and Director of Camp Chihopi, an annual camping event for transplant recipients.
My current role is lead nurse for Intestinal Transplantation at King’s College Hospital, which has been providing small bowel transplantation for children since 2009. This is the second transplant unit within the UK to provide this service. My role includes the support and education for patients and their families from the point of referral for transplant assessment, continuing through the long term follow up after transplant. I am a member of the IRTA allied health group and have been involved in the organisation of the United Kingdom Small Bowel Transplant Meetings. I am also a member of the Multi-visceral and Composite Tissue Advisory Group (MCTAG) which advises the NHS Blood and Transplant service. This has enabled me to work collaboratively with specialist health professionals within this field and share a range of knowledge and experience. My particular interests include health promotion post-transplant and more recently, the development of our service to meet the needs of patients undergoing multi-visceral transplantation. Another area of interest is burden care of care following transplantation and how we can help influence current provision of support in the community setting.