Transition from Pediatric to Adult Healthcare Services for Adolescents and Young Adults with Long-term Conditions

Cecily L. Betz, PhD, RN, FAAN is Professor of Clinical Pediatrics, USC Keck School of Medicine, Department of Pediatrics. Dr. Betz is the Nursing Director and Research Director of the USC University Center of Excellence in Developmental Disabilities at Children's Hospital Los Angeles (CHLA). Dr. Betz' area of specialization is health care transition (HCT) planning and she is a recognized national and international expert in the field. She has written numerous empirical, clinical, and conceptual articles on the topic. She serves on the Administrative Team of the International and Interdisciplinary Health Care Transition Research Consortium that fosters inter-professional collaboration and development of this emerging field of practice and research. She is the Director, Movin' On Up Health Care Transition Program, CHLA Spina Bifida Program She served as the Chair of the Society of Pediatric Nurses Task Force that formulated the 2017 SPN position statement entitled, Transition of Pediatric Patients into Adult Care. She has coedited 13 books in pediatric nursing and topics pertaining to special health care needs and health care transition. She is the Founder and the Editor-in-Chief of the Journal of Pediatric Nursing: Nursing Care of Children and Families, the official journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society. Imelda T. Coyne, PhD, RN, FEANS, FTCD, is Professor of Children's Nursing, School of Nursing and Midwifery and Co-Director, Trinity Research in Childhood Centre (TRiCC) Trinity College, Dublin, Ireland. Dr Coyne is a children's nurse who cares passionately about children and youths' participation rights and welfare. Her research focuses on children and youths participation in healthcare decision-making, triadic treatment decision-making; family-centred care; chronic illness management and transition from child to adult services. She has written over 300 publications in peer-reviewed journals, co-authored four children's nursing textbooks.She has presented widely (more than 200 papers) including many invited keynote presentations and delivered workshops internationally. Currently, she is Ambassador for the Children's Participation Hub and member of the Scientific Advisory Group for the National Longitudinal Study of Children in Ireland, established by the Irish Government. Member of the Royal College of Physicians of Ireland Task Force that formulated the 2018 National Transition Standards for the Transition of Adolescent to Adult Health Care. Dr Coyne was a Guest Editor for the special issue "Health Care Transition for Adolescents and Emerging Adults with Special Health Care Needs and Disabilities" Journal of Pediatric Nursing, 2015. She is a board member and Fellow of the European Academy of Nursing Science (EANS) and member of three nursing editorial boards.

Dedication.- Foreword by  Cecily Betz and Imelda Coyne.- Chapter 1. Introduction/Overview.- Chapter 2. Empowering young persons during the transition to adulthood (examples from Congenital Heart Disease, Belgium).- Chapter 3. Determinants of quality of healthcare for adolescents and young adults within different cultures.- Chapter 4. Evidence base for nurses roles in the transitional care for young people with long term care.  (drawing on a systematic review and examples from UK).- Chapter 5. Analysis of self-management and transition measures for nursing practice in transition.- Chapter 6. On Your Own Feet: How to improve transitional care and young people's self-management. A practical framework for nurses (programme in Netherlands).- Chapter 7. Nurses' role in developing and monitoring for transition related outcomes.- Chapter 8. Benchmarks for transition as an initiative to improve transitional care services (examples from UK).- Chapter 9. Transition in Cystic Fibrosis: an international experience.- Chapter 10. Adaptation of a Broad-Based Youth Transition Programme:  A Nurse-Led Cystic Fibrosis Transition Initiative.- Chapter 11. Nurse-led effort in developing, implementing and evaluating health care transition and promoting developmentally appropriate health care in young people with bleeding disorders.- Chapter 12. Transitional care for young adults with chronic endocrine disorders (not diabetes).- Chapter 13. Conclusion.- Chapter 14. Tools for Practice; research instruments that might be considered (i.e. readiness assessment; QoL measures; and so forth).