Health Care Transition

Albert C. Hergenroeder Constance M. Wiemann Editors Health Care Transition Building a Program for Adolescents and Young Adults with Chronic Illness and Disability 123 Health Care Transition Albert C. Hergenroeder Constance M. Wiemann Editors Health Care Transition Building a Program for Adolescents and Young Adults with Chronic Illness and Disability Editors Albert C. Hergenroeder Constance M. Wiemann Associate Professor, Director of Professor, Chief of Adolescent Medicine Research Section of Adolescent Medicine Section of Adolescent Medicine and Sports Medicine and Sports Medicine Department of Pediatrics Department of Pediatrics Baylor College of Medicine Baylor College of Medicine Texas Children’s Hospital Texas Children’s Hospital Houston, TX, USA Houston, TX, USA ISBN 978-3-319-72867-4 ISBN 978-3-319-72868-1 (eBook) https://doi.org/10.1007/978-3-319-72868-1 Library of Congress Control Number: 2018933347 © Springer International Publishing AG, part of Springer Nature 2018 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Printed on acid-free paper This Springer imprint is published by the registered company Springer International Publishing AG part of Springer Nature The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Preface Depending on the criteria used, the prevalence of chronic disease in 6–21-year-olds in the USA is 6–30%, affecting one in five families. A genera- tion ago, many of these patients did not survive beyond childhood. Due to advances in medical treatments, 90% of individuals with chronic illness and disability survive childhood, and 750,000 young adults with special health- care needs in the USA transition to adulthood annually. Children with special health-care needs are defined as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally (Newacheck 1998). In this book, we focus on adolescents and young adults with special health-care needs (AYASHCN). Health-care transition is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems” (Blum 1993). We include mental health conditions in this definition. For most AYASHCN who have mild conditions, characterized by no limitation of activity or cognitive impairment, the transition to adulthood appears to be successful. As the complexity of the condition increases, however, health-care transition (HCT) becomes more problematic, resulting in increased morbidity and mortality. Because poor HCT can contribute to this increased risk of morbidity and mortality, many pediatric and professional medical organizations, public health agencies, and advocacy organizations have developed statements or guidelines about the need to develop improved transition planning programs. Children’s hospitals are aware that they need formal HCT programs; adult providers recognize the need to develop methods to incorporate young adults with pediatric-onset conditions into their practices; and health-care systems are aware that the transition from pediatric to adult-based care is a particu- larly important one in managing the health of populations. Despite increased recognition of the importance of HCT from pediatric to adult-based care, evidenced by the number of national conferences and increased peer-reviewed publications on the topic, there has been limited progress in addressing these barriers. There is an emerging yet not established evidence base for best methods in developing HCT programs, and major issues to be answered include defining successful HCT and providing evidence for the predictive validity for actual successful HCT outcomes. The purpose of this textbook is to provide health-care professionals caring for youth and young adults with chronic illness and disability with a state of v vi Preface the field reference, including the framework, tools, and case-based examples needed to develop and evaluate an HCT planning program that can be imple- mented regardless of a patient’s disease or disability. The editors of this book have been involved in developing HCT programs over the past 17 years. Drawing from their own personal experience as well as the empirical literature, the editors and invited chapter authors provide valuable perspectives on issues to consider in developing HCT programs across a range of health-care settings. This textbook focuses on how to develop HCT programs regardless of disease or disability. As such, it does not cover condition-specific transition concerns, except as illustrated through case studies. We prefer to think of the transition process as occurring in three phases: preparation, transfer, and engagement of the AYASHCN in the adult health-care system. A process for this course from pediatric to adult-based care is presented in Chap. 1 as the 6 Core Elements of HCT. This process can be applied to any HCT model. Wherever possible, youth/young adult, caregiver, and both pediatric and adult provider perspectives and voices are represented. The terms children with special health-care needs (CSHCN), youth with special health-care needs (YSHCN), and adolescents and young adults with special health-care needs (AYASHCN) are used throughout the book where appropriate. Many chapters contain brief case examples to illustrate key concepts or address literature gaps. As HCT is a process with overlapping components, there is some overlap among chapters. In addition, we have tried to cross-reference chapters, where appropriate. This textbook begins with an introductory chapter (Part I) defining HCT describing the urgent need for comprehensive transition planning, the subse- quent morbidity and mortality associated with poor transition outcomes, barriers to HCT, and a framework for developing and evaluating health-care transition programs. Part II focuses on the anatomic and neurochemical changes that occur in the brain during adolescence and young adulthood, the impact of these changes on cognitive function and behavior, and the ways in which cognitive function and behavior influence AYASHCN management of their illness during transition. The HCT perspectives of important partici- pants in the HCT transition process—youth/young adults, caregivers, and both pediatric and adult providers—are presented in Part III, as well as changes in insurance and additional financial barriers experienced as youth age into young adulthood. Part IV presents ten chapters each addressing an aspect of developing HCT programs, from establishing administrative struc- tures and processes to preparing, transferring, and tracking AYASHCN as they leave the pediatric setting to their successful acceptance into the adult health-care system. A successful transition from the perspective of five key stakeholders in the transition process—patients, caregivers, pediatric providers, adult providers, and third-party payors—is presented in Part V. Issues of HCT finance are covered in two chapters (Part VI). Part VII explores special issues in HCT, such as HCT and the medical home, the international perspective on transition, legal issues in HCT, and transitioning youth with medical complexity or cognitive/intellectual disabilities. The chapters in this section that represent relatively new topics in HCT include the hospitalist’s and Preface vii dentist’s perspectives on HCT and the increased role of pharmacists and pal- liative care. Models of HCT programs are presented in Part VIII, including a case study of a hospital-based transition planning program and an overview of a variety of programmatic models currently operating in the field, as well as the state of the field in terms of evidence to support best practice. A single concluding chapter forms Part IX. In all, there are 37 chapters from 63 authors representing 46 medical cen- ters in North America and Europe. It is important to note that as of the writing of this textbook, the infrastruc- ture of HCT finance is currently being threatened by repeal of the ACA, with proposed dramatic reductions in Medicaid and CHIP payments upon which many AYASHCN depend for life-sustaining therapies. Houston, TX Albert C. Hergenroeder Houston, TX Constance M. Wiemann Contents

Load more