CHALLENGES IN ADOLESCENT HEALTH CARE

Workshop Report

Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development

Board on Children, Youth, and Families

Division of Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL AND INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
www.nap.edu



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Challenges in Adolescent Health Care: Workshop Report CHALLENGES IN ADOLESCENT HEALTH CARE Workshop Report Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development Board on Children, Youth, and Families Division of Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL AND INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Challenges in Adolescent Health Care: Workshop Report THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. This study was supported by Contract/Grant No. 14356 between the National Academy of Sciences and The Atlantic Philanthropies. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13: 978-0-309-11269-7 International Standard Book Number-10: 0-309-11269-9 Additional copies of this report are available from National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu Printed in the United States of America Copyright 2007 by the National Academy of Sciences. All rights reserved. Suggested citation: National Research Council and Institute of Medicine. (2007). Challenges in Adolescent Health Care: Workshop Report. Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development. Board on Children, Youth, and Families, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

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Challenges in Adolescent Health Care: Workshop Report THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Challenges in Adolescent Health Care: Workshop Report COMMITTEE ON ADOLESCENT HEALTH CARE SERVICES AND MODELS OF CARE FOR TREATMENT, PREVENTION, AND HEALTHY DEVELOPMENT ROBERT S. LAWRENCE (Chair), Bloomberg School of Public Health, The Johns Hopkins University LINDA H. BEARINGER, School of Nursing, University of Minnesota SHAY BILCHIK, Center for Juvenile Justice Reform and Systems Integration, Georgetown University SARAH S. BROWN, The National Campaign to Prevent Teen Pregnancy, Washington, DC LAURIE CHASSIN, Department of Psychology, Arizona State University, Tempe NANCY NEVELOFF DUBLER, Montefiore Medical Center, New York BURTON L. EDELSTEIN, College of Dental Medicine, Columbia University HARRIETTE FOX, Maternal and Child Health Policy Research Center, Washington, DC CHARLES E. IRWIN, JR., School of Medicine, University of California, San Francisco KELLY J. KELLEHER, Columbus Children’s Research Institute, The Ohio State University GENEVIEVE M. KENNEY, Urban Institute, Washington, DC JULIA GRAHAM LEAR, School of Public Health and Health Services, Department of Prevention and Community Health, The George Washington University EDUARDO R. OCHOA, JR., Section of General Pediatrics, Arkansas Children’s Hospital, Little Rock FREDERICK P. RIVARA, Department of Pediatrics, University of Washington, Seattle VINOD K. SAHNEY, Blue Cross and Blue Shield of Massachusetts, Boston MARK A. SCHUSTER, RAND, Santa Monica, California, and Departments of Pediatrics and Health Services, University of California, Los Angeles LONNIE SHERROD, Department of Psychology, Fordham University MATTHEW STAGNER, Chapin Hall Center for Children, The University of Chicago LESLIE R. WALKER, Children’s Hospital and Regional Medical Center, Seattle THOMAS G. DeWITT (liaison from the Board on Children, Youth, and Families), Cincinnati Children’s Hospital Medical Center

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Challenges in Adolescent Health Care: Workshop Report JENNIFER APPLETON GOOTMAN, Study Director ALEXANDRA BEATTY, Rapporteur LESLIE J. SIM, Program Officer WENDY KEENAN, Program Associate APRIL HIGGINS, Senior Program Assistant (until July 2007) REINE Y. HOMAWOO, Senior Program Assistant (from August 2007)

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Challenges in Adolescent Health Care: Workshop Report BOARD ON CHILDREN, YOUTH, AND FAMILIES BERNARD GUYER (Chair), Bloomberg School of Public Health, The Johns Hopkins University BARBARA L. WOLFE (Vice Chair), Department of Economics and Population Health Sciences, University of Wisconsin WILLIAM R. BEARDSLEE, Department of Psychiatry, Children’s Hospital, Boston LINDA MARIE BURTON, Sociology Department, Duke University P. LINDSAY CHASE-LANSDALE, Institute for Policy Research, Northwestern University BRENDA ESKENAZI, School of Public Health, University of California, Berkeley CHRISTINE C. FERGUSON, School of Public Health and Health Services, The George Washington University WILLIAM T. GREENOUGH, Department of Psychology, University of Illinois RUBY HEARN, Robert Wood Johnson Foundation (emeritus), Princeton, NJ BETSY LOZOFF, Center for Human Growth and Development, University of Michigan SUSAN G. MILLSTEIN, Division of Adolescent Medicine, University of California, San Francisco CHARLES A. NELSON, Laboratory of Cognitive Neuroscience, Children’s Hospital, Boston ELENA O. NIGHTINGALE, Institute of Medicine, The National Academies, Washington, DC PATRICIA O’CAMPO, Centre for Research on Inner City Health, St. Michael’s Hospital, Toronto LAURENCE D. STEINBERG, Department of Psychology, Temple University ELLEN A. WARTELLA, Office of the Executive Vice Chancellor and Provost, University of California, Riverside MICHAEL ZUBKOFF, Department of Community and Family Medicine, Dartmouth Medical School ROSEMARY CHALK, Board Director WENDY KEENAN, Program Associate

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Challenges in Adolescent Health Care: Workshop Report Preface The Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development was formed by the National Academies in May 2006, with funding from The Atlantic Philanthropies, to study adolescent health care services in the United States and develop policy and research recommendations that highlight critical health care needs, promising service models, and components of care that may strengthen and improve health care services for youth and contribute to healthy adolescent development. This report summarizes the presentations and discussion at two one-day workshops organized as a part of the work of this committee. These workshops were an effort to take stock of the current knowledge base on adolescent health care services, settings, and systems; to incorporate personal experiences; and to help inform the work of the committee. In November 2006 the committee convened a community forum to elicit the views of those who use and those who provide adolescent health care, with the goal of revealing gaps in current delivery mechanisms through perspectives from people who work with vulnerable populations of adolescents, individuals who work in different settings and systems that deliver health care to adolescents, and young adults themselves. In addition, the forum invited public stakeholders to present their views. In January 2007 the committee convened a workshop to examine the research base on the organization and delivery of adolescent health care services by (1) reviewing the state of adolescent health care systems, (2) identifying quality features of an adolescent health care system, (3) reviewing

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Challenges in Adolescent Health Care: Workshop Report the evidence base on specific service delivery models or systems of care, and (4) identifying the evidence base of health care delivery to vulnerable populations of adolescents. Given the limitations of both time and scope, the workshops could not address all issues that are certainly critical. It is our hope, however, that this report helps illuminate important issues in adolescent health care and begins unraveling this challenging and multifaceted area of study. Individual presentations from both workshops are available at http://www.bocyf.org/. We are grateful for the contributions of the expert presenters, speakers, and discussants who contributed to the meeting (see the appendixes for the workshop agendas and list of participants). Special appreciation also goes to the committee members who volunteered their time and intellectual efforts to shape the workshop programs and identify themes and contributors. In addition, we give special thanks to Alexandra Beatty, who prepared a comprehensive draft of the workshop report, Leslie Sim and Jennifer Gootman, who directed the planning and workshop preparation and the production of the final publication, April Higgins and Wendy Keenan, who assisted with preparation of meetings and workshop, and Matthew McDonough, who assisted with running the workshops. Although the workshop report was prepared by the committee, it does not represent findings or recommendations that can be attributed to the committee members. This workshop report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the Report Review Committee of the National Research Council. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this report: Trina Anglin, Office of Adolescent Health, Health Resources and Services Administration, Rockville, MD; Claire D. Brindis, National Adolescent Health Information Center, Institute for Health Policy Studies, University of California, San Francisco; Denise Dougherty, Child Health and Quality Improvement, Agency for Healthcare Research and Quality, Gaithersburg, MD; Jack C. Ebeler, Ebeler Consulting, Reston, VA; Elizabeth Feldman, Pediatric/ Adolescent Coordinator, UIC/Illinois Masonic Family Practice Residency, University of Illinois College of Medicine; Alan Shapiro, Community Pediatrics and South Bronx Children and Family Health Center, Monte-

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Challenges in Adolescent Health Care: Workshop Report fiore Medical Group, New York, NY; and Joshua M. Sharfstein, Health Commissioner’s Office, City of Baltimore, MD. Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the report nor did they see the final draft of the report before its release. The review of this report was overseen by Robert Graham, Department of Family Medicine, University of Cincinnati College of Medicine. Appointed by the National Research Council, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the author(s) and the institution. Robert S. Lawrence, Chair Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development

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Challenges in Adolescent Health Care: Workshop Report Contents 1   INTRODUCTION   1 2   OVERVIEW OF ADOLESCENT HEALTH ISSUES   6      Adolescent Health Status,   7      Current State of Care,   11      Looking Systemwide,   19      Health Insurance,   22 3   NEEDS OF THE MOST VULNERABLE ADOLESCENTS   24      Adolescents in Foster Care,   25      Adolescents in the Juvenile Justice System,   27      Runaway and Homeless Adolescents,   27      Low-Income Adolescents,   29      Adolescents with Disabilities,   30      Adolescents with Mental Illness,   31      Adolescents with Substance Use Disorders,   32      Lesbian, Gay, Bisexual, Transgender, or Questioning Adolescents,   34      Adolescents Who Live in U.S.-Mexico Border Communities,   36      Observations,   37 4   MAKING THE SYSTEM WORK   41      Providing Care to Adolescent Girls and Young Women,   41      Providing Care to Rural Adolescents,   43

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Challenges in Adolescent Health Care: Workshop Report      Providing Care to Urban Adolescents,   44      Providing Care Through School-Based Health Centers,   45      Providing Care Through a Managed Care Organization,   47      Providing Care Through Public Programs,   48 5   ISSUES TO ADDRESS   51      System Challenges,   52      Gaining Adolescents’ Trust,   53      Questions for Further Exploration,   54     REFERENCES   56     APPENDIXES     A   Community Forum Agenda and Participants   61 B   Research Workshop Agenda and Participants   68