Transition from Pediatric to Adult Medical Care


David Wood, PhD (Editor)
Department of Psychology, East Tennessee State University, Johnson City, Tennessee, USA
Department of Pediatrics, Quillen College of Medicine, East Tennessee State University, Johnson City, USA
Tennessee and College of Public Health, East Tennessee State University, Johnson City, Tennessee, USA

John G. Reiss (Editor)
Health Services, Division for Intellectual and Developmental Disabilities, Ministry of Social Affairs and Social Services, Jerusalem, Israel

María E. Ferris (Editor)
University of North Carolina Kidney Center, Chapel Hill, North Carolina

Linda R. Edwards (Editor)
Health Services, Division for Intellectual and Developmental Disabilities, Ministry of Social Affairs and Social Services, Jerusalem, Israel

Joav Merrick, MD, MMedSci, DMSc, (Editor)
Medical Director, Health Services, Division for Intellectual and Developmental Disabilities, Ministry of Social Affairs and Social Services, Jerusalem, Israel
Division of Adolescent Medicine, KY Children’s Hospital, Department of Pediatrics, Lexington, Kentucky, USA
National Institute of Child Health and Human Development, Jerusalem, Israel
Division of Pediatrics, Hadassah Hebrew University Medical Centers, Mt Scopus Campus, Jerusalem, Israel
School of Public Health, Georgia State University, Atlanta, Georgia, USA

Series: Pediatrics, Child and Adolescent Health
BISAC: HEA000000

Transitioning youth with chronic medical conditions (also known as Youth with Special Health Care Needs–YSHCN) to adult services is a complex issue in clinical practice. It is estimated that about 10.2 million children and youth, ages 0–17 years, in the United States alone have special health care needs and while this group constitutes only about 14% of the childhood population, they account for 40% or more of medical expenditures for children. As reflected in this book there are a growing number of programs and projects from around the world that are developing and implementing innovative approaches to promoting successful health care transitions. The authors hope that the information and discussions provided will stimulate your interest and encourage you to take action to improve health care transition related services and supports for adolescents and young adults with special health care needs. (Imprint: Nova Biomedical )

Table of Contents

Table of Contents



Section One: General Aspects

Chapter 1. Utilization of technology in transition programs
(Mark A Applebaum, Erica F Lawson and Emily von Scheven)

Chapter 2. Toward evidence-based health care transition: The Health Care Transition Research Consortium
(Maria E Ferris, David Wood, M Ted Ferris, Peter Sim, Bruce Kelly, Arwa Saidi, Santi Bhagat, Kristi Bickford and Irene Jurczyk)

Chapter 3. Measuring health care transition planning outcomes: Challenges and issues
(Cecily L Betz and Kathryn Smith)

Chapter 4. The use and usefulness of MyHealth passport: An online tool for the creation of a portable health summary
(Jesse Wolfstadt, Aviva Kaufman, Jordan Levitin and Miriam Kaufman)

Chapter 5. Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital
(Susan M Fernandes, Laurie Fishman, Joanne O’Sullivan-Oliveira, Sonja Ziniel, Patrice Melvin, Paul Khairy, Rebecca O’Brien, Romi A Webster, Michael J Landzberg and Gregory S Sawicki)
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Chapter 6. Clinician perceptions of transition of patients with pediatric-onset chronic disease to adult medical care: Comparing a pediatric facility integrated within an adult institution with a free-standing pediatric hospital
(Susan M Fernandes, Michael J Landzberg, Laurie N Fishman, Paul Khairy, Gregory S Sawicki, Sonja Ziniel, Patrice Melvin, Joanne O’Sullivan-Oliveira, Peter Greenspan and Ami B Bhatt)
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Chapter 7. Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs
(Tricia S Williams, Elisabeth MS Sherman, Catherine Dunseith, Jean K Mah, Marlene Blackman, John Latter, Ismail Mohamed, Daniel J Slick and Nancy Thornton)

Chapter 8. A hospital-wide initiative to support medically complex adolescents and young adults transition experience: The process of a systems approach to transition in a tertiary care setting
(Michelle Forcier, Sarah Ahlm, Rebecca Boudos, Parag Shah, Shubhra (Sue) Mukherjee, Kathy Zebracki and Jill Weissberg-Benchell)

Chapter 9. Social and family issues
(Jacqueline A Noonan)

Section Two: Specific Diseases

Chapter 10. Making rheumtogrow: The rationale and framework for an internet based health care transition intervention
(Peter Scal, Ann Garwick and Keith J Horvath)

Chapter 11. Barriers and facilitators to implementing a transition pathway for adolescents with diabetes: A health professionals perspective
(Christine Price, Sally Corbett and Gail Dovey-Pearce)

Chapter 12. Transition of patients with endocrinology disorders
(Manmohan K Kamboj, Donald E Greydanus, Lee A Bricker and Dilip R Patel)

Chapter 13. Transitioning to adult care among adolescents with sickle cell disease: A transitioning clinic based on patient and caregiver concerns and needs
(Robert D Latzman, Suvankar Majumdar, Carolyn Bigelow, T David Elkin, Mary G Smith, Gail C Megason, Priya Srivastava and Rathi Iyer)

Chapter 14. Web-based learning: Is it an effective method for educating pediatric residents about transition to adult subspecialty congenital heart disease care?
(Arwa Saidi, John Reiss, Petar Breitinger, Erik Black, Joseph Paolillo and Shelley Collins)

Chapter 15. Transition preparation training program and spina bifida
(Cecily L Betz, Kathryn Smith and Kristy Macias)

Chapter 16. Assessing the satisfaction of teens with kidney transplants who have attended an adolescent transition clinic
(Cheryl Belair, Jordan Gilleland and Sandra Amaral)

Section Three: Disabilities

Chapter 17. Barriers to transition to adult care for youth with intellectual disabilities
(Laura Pickler, Yvonne Kellar-Guenther and Edward Goldson)

Chapter 18. Implementation of the LIFEspan model of transition care for youth with childhood onset disabilities
(Shauna Kingsnorth, Sally Lindsay, Joanne Maxwell, Irina Tsybina, Hannah Seo, Colin Macarthur and Mark Bayley)

Chapter 19. The CART model: Organized systems of care for transition age youth and adults with developmental disabilities
(Clarissa Kripke, Mary Giammona, Alan Fox and Jim Shorter)

Chapter 20. Transition from child oriented to adult oriented healthcare for children with neurodevelopmental disabilities
(Dilip R Patel and Donald E Greydanus)

Section three: International Aspects

Chapter 21. Transition to adult care in an Australian context
(Katharine S Steinbeck, Lynne Brodie and Susan J Towns)

Chapter 22. Journeying from nirvana with mega-mums and broken hearts: The complex dynamics of transition from paediatric to adult settings
(Lynne Brodie, Jackie Crisp, Brendan McCormack, Valerie Wilson, Pauline Bergin and Catherine Fulham)

Chapter 23. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: A survey of Dutch adult gastroenterologists’ perspectives
(Renée M Barendse, Daan Jaan de Kerk, Angelika Kindermann, Laurie N Fishman, Richard J Grand, Joep F Bartelsman and Hugo SA Heymans)

Section Four: Long Term Experience

Chapter 24. The Self-Management and Transition-to-Adulthood Program at the University of North Carolina: Lessons Learned (and Still Learning)
(Maria E Ferris, Michael T Ferris, Carolyn Viall, Heather D Stewart, Nicole Fenton, Cara Haberman, Edward A Iglesia, Lauren E Hancock, Dona H Harward, Donna Gilleskie, James O’Neill, Robert Imperial, Zion Ko, Mary H Benton, May Doan, Kristi Bickford, Randy Detwiler, Kenneth Andreoni, John D Mahan, Zachary Smith and Keisha Gibson)

Section Five: Acknowledgements

Chapter 25. About the editors

Chapter 26. Jacksonville Health and Transition Services (JaxHATS) and Center for Health Equity and Quality Research, UF College of Medicine-Jacksonville, Jacksonville, Florida

Chapter 27. About the National Institute of Child Health and Human Development in Israel

Chapter 28. About the book series “Pediatrics, child and adolescent health”

Section Five:


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