Health Care Transition

Albert C. Hergenroeder Constance M. Wiemann Editors Health 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 Associate Professor, Director of Research Section of Adolescent Medicine and Sports Medicine Department of Pediatrics Baylor College of Medicine Texas Children’s Hospital Houston, TX, USA Constance M. Wiemann Professor, Chief of Adolescent Medicine Section of Adolescent Medicine and Sports Medicine Department of Pediatrics Baylor College of Medicine Texas Children’s Hospital Houston, TX, USA <ul style="display: flex;"><li style="flex:1">ISBN 978-3-319-72867-4 </li><li style="flex:1">ISBN 978-3-319-72868-1 (eBook) </li></ul><a href="/goto?url=https://doi.org/10.1007/978-3-319-72868-1" target="_blank">https://doi.org/10.1007/978-3-319-72868-1 </a>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 PublishingAG 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 generation 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 healthcare 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 particularly 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<ul style="display: flex;"><li style="flex:1">vi </li><li style="flex:1">Preface </li></ul>the field reference, including the framework, tools, and case-based examples needed to develop and evaluate an HCT planning program that can be implemented 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 subsequent 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 participants 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 structures 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 <ul style="display: flex;"><li style="flex:1">Preface </li><li style="flex:1">vii </li></ul>dentist’s perspectives on HCT and the increased role of pharmacists and palliative 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 centers in North America and Europe. It is important to note that as of the writing of this textbook, the infrastructure 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 Houston, TX Albert C. Hergenroeder Constance M. Wiemann Contents Part I Introduction <ul style="display: flex;"><li style="flex:1">1</li><li style="flex:1">Introduction: Historical Perspectives, </li></ul>Current Priorities, and Healthcare Transition Processes, Evidence, and Measurement . . . . . . . . . . . . . . . . . . . Patience H. White and Margaret A. McManus 3Part II The Adolescent and Young Adult: A Developmental Perspective <ul style="display: flex;"><li style="flex:1">2</li><li style="flex:1">The Anatomical, Hormonal and Neurochemical </li></ul>Changes that Occur During Brain Development in Adolescents and Young Adults . . . . . . . . . . . . . . . . . . . . . . . . 15 Allan Colver and Gail Dovey-Pearce <ul style="display: flex;"><li style="flex:1">3</li><li style="flex:1">The Relationships of Adolescent Behaviours </li></ul>to Adolescent Brain Changes and their Relevance to the Transition of Adolescents and Young Adults with Chronic Illness and Disability . . . . . . . . . . . . . . . . . . . . . . . 21 Allan Colver and Gail Dovey-Pearce Part III Personal and Professional Perspectives on Healthcare Transition <ul style="display: flex;"><li style="flex:1">4</li><li style="flex:1">Healthcare Transition from the AYASHCN’s </li></ul>Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Isabel Yuriko Stenzel Byrnes 56 Healthcare Transition from the Family Perspective . . . . . . . . . 43 Laura G. Buckner Healthcare Transition from the Pediatric Provider’s Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Cecily L. Betz <ul style="display: flex;"><li style="flex:1">7</li><li style="flex:1">Healthcare Transition from the Adult Provider’s </li></ul>Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Nathan Samras, Janet Ma, Stacey Weinstein, and Alice A. Kuo ix <ul style="display: flex;"><li style="flex:1">x</li><li style="flex:1">Contents </li></ul><ul style="display: flex;"><li style="flex:1">8</li><li style="flex:1">Healthcare Insurance Changes as Youth </li></ul>Become Young Adults. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Beth Sufian, James Passamano, and Amy Sopchak Part IV Developing a Healthcare Transition Program <ul style="display: flex;"><li style="flex:1">9</li><li style="flex:1">Establishing the Administrative Structure </li></ul>and Support for a Healthcare Transition Program . . . . . . . . . . 87 Mary R. Ciccarelli and Jason Woodward 10 Mobilizing Pediatric Providers . . . . . . . . . . . . . . . . . . . . . . . . . . 99 Kathy Sanabria, James Harisiades, Rebecca Boudos, and Parag Shah 11 Developing Transition Policies, Procedures, or Guidelines. . . . 107 Roberta G. Williams and Ellen F. Iverson 12 Establishing a Method to Monitor Transition Planning and Track Patient Outcomes Following Transfer . . . . . . . . . . . 113 Gregory Sawicki 13 Incorporating Healthcare Transition Readiness Assessment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119 Lisa A. Schwartz, Alexandra M. Psihogios, and Emily M. Fredericks 14 Employing Healthcare Transition Planning Tools. . . . . . . . . . . 129 Constance M. Wiemann and Albert C. Hergenroeder 15 Understanding the Pediatric and Adult Healthcare System: Adapting to Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139 Megumi J. Okumura, Ian S. Harris, and Mary Ellen Kleinhenz 16 Developing the Process for Transferring Care from Pediatric to Adult Providers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149 Megumi J. Okumura and Erica Lawson 17 Preparing the Adult Practice to Accept Adolescents and Young Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157 Marybeth R. Jones, Marilyn Augustine, and Brett W. Robbins 18 Establishing a System for Ensuring Transfer Completion . . . . 163 Niraj Sharma, Kitty O’Hare, and Ahmet Uluer Part V Defining Successful Transition 19 Defining Successful Transition: Young Adult Perspective . . . . 173 Teresa Nguyen and Mallory Cyr 20 Defining Successful Transition: Parent Perspective. . . . . . . . . . 181 Rosemary Alexander and Laura J. Warren <ul style="display: flex;"><li style="flex:1">Contents </li><li style="flex:1">xi </li></ul>21 Defining Successful Transition: Pediatric Provider Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191 Cynthia Fair, Sophie Rupp, Laura C. Hart, Ana Catalina Alvarez-Elias, Martha Perry, and Maria Ferris 22 Defining Successful Transition: Adult Provider Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201 Gregg Talente 23 Defining Successful Transition: Payer Perspective . . . . . . . . . . 207 Angelo P. Giardino Part VI Financing Healthcare Transition <ul style="display: flex;"><li style="flex:1">24 Financial Cost of Healthcare Transition </li><li style="flex:1">223 </li></ul>Angelo P. Giardino 25 Payment for Healthcare Transition Services . . . . . . . . . . . . . . . 233 Margaret A. McManus, Patience H. White, and David Kanter Part VII Special Issues in Healthcare Transition 26 Healthcare Transition and the Medical Home . . . . . . . . . . . . . . 241 Jennifer Lail 27 The Hospitalist’s Perspective on Healthcare Transition . . . . . . 255 Ryan J. Coller, Sarah Ahrens, and Debra Lotstein 28 The International Perspective on Healthcare Transition . . . . . 269 Beth E. Anderson, Swaran P. Singh, Claire Stansfield, and Kristin Liabo 29 Expanding the Role of the Pharmacist . . . . . . . . . . . . . . . . . . . . 279 Nicola J. Gray, Jonathan Burton, Roisin Campbell, and Janet E. McDonagh 30 Legal Issues: Guardianship and Supportive Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 293 Beth Sufian, James Passamano, and Amy Sopchak 31 Transitioning Adolescents and Young Adults with Medical Complexity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 301 Mary R. Ciccarelli 32 Transitioning Youth with Intellectual and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . 313 Laura Pickler and Janet Hess 33 Palliative Care in Adolescents and Young Adults with Special Healthcare Needs. . . . . . . . . . . . . . . . . . . . . . . . . . . 329 Jill Ann Jarrell, Ellen Roy Elias, and Tammy I. Kang 34 Healthcare Transitions and Dental Care . . . . . . . . . . . . . . . . . . 339 Kimberly Espinoza <ul style="display: flex;"><li style="flex:1">xii </li><li style="flex:1">Contents </li></ul>Part VIII Models of Healthcare Transition Programs 35 A Successful Healthcare Transition Program in a Hospital Setting � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 353 Khush Amaria and Miriam Kaufman 36 Different Healthcare Transition Models. . . . . . . . . . . . . . . . . . . 363 Cecily L. Betz Part IX Conclusions 37 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 381 Constance M. Wiemann and Albert C. Hergenroeder Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 383 Index. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 385 Contributors Sarah Ahrens, M�D� Department of Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA Rosemary Alexander, Ph�D� Texas Parent to Parent, Austin, TX, USA Ana Catalina Alvarez-Elias, M�D�, M�Sc� Hospital Infantil de Mexico Federico Gomez, Universidad Nacional Autonoma de Mexico, Mexico City, Mexico Sick Kids, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada Khush Amaria, Ph�D�, C�Psych� Division of Adolescent Medicine and Department of Psychology, Good 2 Go Transition Program, Hospital for Sick Children, Toronto, ON, Canada Beth E� Anderson, Ph�D� Social Care Institute for Excellence, London, UK Marilyn Augustine, M�D� Division of Endocrinology and Metabolism, University of Rochester Medical Center, Rochester, NY, USA Cecily L� Betz, Ph�D�, R�N� Department of Pediatrics, University of Southern California (USC), Keck School of Medicine, Los Angeles, CA, USA USC University Center for Excellence in Developmental Disabilities, Children’s Hospital Los Angeles, Los Angeles, CA, USA Rebecca Boudos, L�C�S�W� Chronic Illness Transition Program, Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA Laura G� Buckner, M�Ed�, L�P�C� Texas Center for Disability Studies, The University of Texas, Austin, TX, USA Jonathan Burton, B�Pharm� Right Medicine Pharmacy, University of Stirling, Stirling, UK Isabel Yuriko Stenzel Byrnes, L�C�S�W�, M�P�H� Social Worker and Patient

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