ADOLESCENT HEALTH SERVICES

Missing Opportunities

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

Robert S. Lawrence, Jennifer Appleton Gootman, Leslie J. Sim, Editors

Board on Children,Youth, and Families

NATIONAL RESEARCH COUNCIL AND INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

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A D OL E S CE N T H E A LT H S E RVI C E S M i s s i n g O p p o r t u n it i e s Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development Robert S. Lawrence, Jennifer Appleton Gootman, Leslie J. Sim, Editors Board on Children, Youth, and Families

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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 Govern- ing 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. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Award No. 14356 between the National Academy of Sciences and The Atlantic Philanthropies (USA), Inc. Any opinions, findings, conclusions, or recommen- dations 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. Library of Congress Cataloging-in-Publication Data Adolescent health services : missing opportunities / Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development, Board on Children, Youth, and Families ; Robert S. Lawrence, Jennifer Appleton Gootman, Leslie J. Sim, editors. p. ; cm. Includes bibliographical references and index. ISBN 978-0-309-11467-7 (hardback) 1. Teenagers—Medical care—United States. I. Lawrence, Robert S., 1938- II. Gootman, Jennifer Appleton. III. Sim, Leslie J. IV. National Research Council (U.S.). Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development. [DNLM: 1. Adolescent Health Services—United States. 2. Adolescent Development— United States. 3. Delivery of Health Care, Integrated—United States. 4. Health Status— United States. 5. Needs Assessment—United States. 6. Quality of Health Care—United States. WA 330 A239 2009] RJ102.A375 2009 362.19600835—dc22 2008042174 Additional copies of this report are available from the 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. Copyright 2009 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Cover photo © Getty Images. Suggested citation: National Research Council and Institute of Medicine. (2009). Adolescent Health Services: Missing Opportunities. Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development, R.S. Lawrence, J. Appleton Gootman, and L.J. Sim, Editors. Board on Children, Youth, and Families. Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

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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 wel- fare. 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent 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 Insti- tute 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 Sci- ences 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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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, School of Medicine, University of Minnesota SHAY BILCHIK, Public Policy Institute, Georgetown University SARAH S. BROWN, National Campaign to Prevent Teen and Unplanned Pregnancy, Washington, DC LAURIE CHASSIN, Department of Psychology, Arizona State University, Tempe GORDON DeFRIESE,1 University of North Carolina at Chapel Hill NANCY DUBLER, Montefiore Medical Center, Yeshiva University, New York BURTON L. EDELSTEIN, College of Dental Medicine, Mailman School of Public Health, Columbia University HARRIETTE FOX, Incenter Strategies, Washington, DC CHARLES E. IRWIN, JR., School of Medicine, University of California, San Francisco KELLY KELLEHER, College of Medicine, College of Public Health, Nationwide Children’s Hospital, The Ohio State University GENEVIEVE KENNEY, Urban Institute, Washington, DC JULIA GRAHAM LEAR, School of Public Health and Health Services, George Washington University EDUARDO OCHOA, JR., College of Medicine, College of Public Health, University of Arkansas for Medical Sciences FREDERICK P. RIVARA, School of Medicine, School of Public Health, University of Washington, Seattle VINOD K. SAHNEY, Blue Cross Blue Shield of Massachusetts, Boston MARK A. SCHUSTER, Children’s Hospital Boston, Harvard Medical School, Harvard University LONNIE SHERROD, Society for Research in Child Development, Ann Arbor, MI MATTHEW STAGNER, Chapin Hall Center for Children, University of Chicago LESLIE R. WALKER, Department of Pediatrics, University of Washington, Seattle Children’s Hospital 1 Member until February 2007. v

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THOMAS G. DeWITT (liaison from the Board on Children, Youth, and Families), Cincinnati Children’s Hospital Medical Center, University of Cincinnati JENNIFER APPLETON GOOTMAN, Study Director LESLIE J. SIM, Program Officer REINE Y. HOMAWOO, Senior Program Assistant (from August 2007) WENDY KEENAN, Program Associate APRIL HIGGINS, Senior Program Assistant (until July 2007) vi

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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 JANE D. BROWN, School of Journalism and Mass Communication, University of North Carolina at Chapel Hill LINDA MARIE BURTON, Sociology Department, Duke University P. LINDSAY CHASE-LANSDALE, Institute for Policy Research, Northwestern University CHRISTINE C. FERGUSON, School of Public Health and Health Services, George Washington University WILLIAM T. GREENOUGH, Department of Psychology, University of Illinois RUBY HEARN, Robert Wood Johnson Foundation (emeritus), Princeton, NJ MICHELE D. KIPKE, Saban Research Institute, USC Childrens Hospital Los Angeles 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 PATRICIA O’CAMPO, Centre for Research on Inner City Health, St. Michael’s Hospital, Toronto, Canada FREDERICK P. RIVARA, Schools of Medicine and Public Health, University of Washington, and Children’s Hospital and Regional Medical Center, Seattle LAURENCE D. STEINBERG, Department of Psychology, Temple University JOHN R. WEISz, Judge Baker Children’s Center and Harvard Medical School MICHAEL zUBKOFF, Development of Community and Family Medicine, Dartmouth Medical School ROSEMARY CHALK, Board Director WENDY KEENAN, Program Associate vii

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Reviewers T his report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. 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 study charge. The review comments and draft manuscript remain confiden- tial to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Nancy Birkhimer, Teen and Young Adults Health Program, Maine Department of Human Services, Augusta, ME; Claire D. Brindis, National Adolescent Health Information Center, Institute for Health Policy Studies, University of California, San Francisco; Angela Diaz, Adolescent Health Center, Mount Sinai School of Medicine, New York, NY; Denise Dougherty, Child Health and Quality Improvement, Agency for Healthcare Research and Quality, Gaithersburg, MD; Daniel Eisenberg, Health Management and Policy, School of Public Health, University of Michigan; Elizabeth Feldman, Pediatric/Adolescent Coordinator, UIC/Illinois Masonic Family Practice Residency, University of Illinois College of Medicine; Brandon Hayes-Lattin, Adolescent and Young Adult Oncology Program, Oregon Health and Science University Cancer Institute, Portland; Jonathan Klein, Departments of Pediatrics and Community and Preventive Medicine, University of Rochester; Vaughn I. Rickert, Clinical Population and Family Health, Mailman School of Public Health, Columbia University; and Alan Shapiro, Community Pediatrics ix

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x REVIEWERS and South Bronx Children and Family Health Center, Montefiore Medical Group, New York, NY. Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Robert Graham, Depart- ment of Family Medicine, University of Cincinnati College of Medicine, and Nancy E. Adler, Center for Health and Community, University of California, San Francisco. Appointed by the National Research Council, they were 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 authoring committee and the institution.

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Preface U nder the best of circumstances, providing appropriate and compre- hensive health services to adolescents poses many challenges. In the early years of adolescence, young people struggle with what Erik Erikson has described as the life stage of Identity versus Role Confusion, with many questions about who they are and where they fit in. As they move into young adulthood, the life stage of Intimacy versus Isolation raises questions of what to do with their lives and with whom, and where and how to settle down and take on adult responsibilities. Most adolescents are healthy, with a low incidence of acute illness and low prevalence of chronic conditions. Some adolescents, however, engage in unhealthful habits and risky behavior that expose them to the harmful effects of, for example, un- safe sex and experimentation with drugs, tobacco, and alcohol. Many high school students drink heavily or “binge” drink regularly. Others succumb to violent acts directed at others or themselves. Unintentional injuries are the leading cause of death among adolescents, dominated by those due to mo- tor vehicle crashes. Between 10 and 20 percent of adolescents have mental health problems, and overweight and obesity place an increasing number of adolescents at risk for type 2 diabetes and other health problems. Rising rates of asthma interfere with normal activities and school attendance and diminish the quality of life. Adolescence is a period when patterns of health-promoting or health- damaging behaviors are established that will have a substantial influence on health status during adulthood, affecting rates of acute and chronic disease and life expectancy. Identification and treatment of the acute effects of xi

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xii PREFACE health-damaging behaviors provides an opportunity to counsel and educate adolescents about the lifelong benefits of establishing a healthy lifestyle. The current system of health services in the United States is ill suited to providing the appropriate mix of clinical and preventive services to adolescents, especially those in certain circumstances, such as those who are part of the child welfare or juvenile justice system. Even adolescents with strong family and social supports and adequate financial resources are faced with a bewildering array of separate and poorly coordinated health programs and services delivered in multiple public and private settings. This arrangement may be sufficient for the majority of adolescents who are healthy, but it is woefully inadequate to meet the acute and chronic needs of vulnerable youths, especially those suffering from mental and behavioral disorders. Still less adequate is the system’s ability to mount an effective screening program to support interventions focused on risk assessment, health promotion, and fostering of positive youth development. The cur- rent health services workforce includes few adolescent health generalists, specialists, educators, and scholars, and standards for accreditation of training programs for health providers for adolescents and for licensure and certification are inadequate. To address these issues and develop recommendations for improving health care services for adolescents, The Atlantic Philanthropies provided funding to the National Research Council/Institute of Medicine (NRC/ IOM) Board on Children, Youth, and Families. Through the board, the NRC and IOM formed the Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development in 2006. This report, Adolescent Health Services: Missing Opportunities, is the product of a multidisciplinary collaboration among committee mem- bers, NRC/IOM staff, and consultants. The committee held five meetings and two workshops—one for re- search and health care service experts, and one for community and youth leaders. Committee members and staff conducted five site visits to learn firsthand about creative approaches to providing health services to adoles- cents, especially underserved groups. We engaged in vigorous discussion of the best approaches to improve adolescent health services, clarifying our underlying assumptions and reconciling different perspectives and priori- ties. It is our hope that the findings and recommendations presented in this report will help policy makers, service providers and their professional societies, and funders and government agencies shift the current patchwork quilt of health services for adolescents from a series of individual services into a coherent system of care. The committee could not have done its work without the outstand- ing guidance and support provided by NRC/IOM staff Jennifer Gootman, study director, and Leslie Sim, program officer. Wendy Keenan and Reine

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xiii PREFACE Homawoo provided highly skilled logistical support. Rosemary Chalk’s guidance and counsel were invaluable throughout our deliberations. Fi- nally, the young people and health professionals who participated in our workshops and those who shared their stories during our site visits deserve special thanks. Their experience in coping with the current system of care and their aspirations for something better fueled the committee’s resolve to make a difference. Robert S. Lawrence, Chair Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development

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Acknowledgments B eyond the hard work of the committee and National Research Council/Institute of Medicine (NRC/IOM) project staff, this report reflects contributions from numerous other individuals and groups. The committee greatly benefited from the opportunity for discussion with those who made presentations at and attended the committee’s work- shops and meetings, including Dr. Kristin Adams, Salvador Balcorta, Dr. Anne Beal, Dr. Christina Bethell, Dr. Robert Blum, Rhonda Braxton, Dr. Claire Brindis, Dr. Richard Catalano, Coleen DeFlorimonte, Dr. Denise Dougherty, Dr. Abigail English, Dianne Ewashko, Paul Fogle, Dr. Robert Garofalo, Dr. David Grossman, Dr. Kimberly Hoagwood, Dr. Charles Homer, Linda Juszczak, Dr. Jonathan Klein, Andrea MacKay, Matthew Morton, Dr. Kathaleen Perkins, Shawn Semelsberger, Dr. Alan Shapiro, Dr. Josh Sharfstein, Dr. Warner Slack, Dr. Connie Weisner, and Dr. Charles Wibbelsman. This study was sponsored by The Atlantic Philanthropies. We wish to thank Jackie Williams Kaye, Gara LaMarche, Charles Roussel, Mini Sanyal, Stuart Schear, and of course Debra Delgado for their support and guidance. Paula Elbirt’s early advice on the development of this project is greatly appreciated. We appreciate the extensive contributions of Dr. Robert Blum, Tumaini Coker, Abigail English, Dr. Gerry Fairbrother, Carolyn Garcia, Jose Lascal, Stephanie Limb, Andrea McKay, Daniel Moller, Joseph Schuchter, and Katherine Suellentrop, whom we commissioned to provide technical re- views of various portions of the report. Their insight and expertise added to the quality of the evidence presented. Additionally, Rona Briere and Alisa xv

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xvi ACKNOWLEDGMENTS Decatur provided superb editorial assistance in preparing the final report. The work of Eric Slade and his colleagues at Eric Slade Productions in pre- paring the video/DVD on adolescent health services enhanced opportunities to dissemate this report more broadly. The committee was grateful for the opportunity to conduct five site visits during which committee members and NRC/IOM staff toured facili- ties and spoke with a variety of staff members and patients to learn about the successes and challenges in delivering adolescent health services to thousands of young people. Thanks are extended to the staff at the Howard Brown Health Cen- ter and Broadway Youth Center, including Tony Alvarado-Rivera, Daniel Alvarez, Lara Brooks, Vea Cleary, Dr. Michael Cook, Michelle Emerick, Dr. Robert Garafalo, Amy Herrick, Joseph Hollendoner, Kristin Keglovitz, Jerry Lassa, Letty Martinez, Michael McFadden, Nicole Perez, Wendell Ward, Ebonii Warren, and Linda Wesp, as well as program partners Barb Bolson from The Night Ministry and David Myers from the Teen Living Program. Thanks are due as well to the staff at Denver Health, including Lisa Abrams, Carolyn Carter, Audrey Gill, Dr. Paritosh Kaul, Abigail Mann, Dr. Paul Melinkovich, Trisha Mestas, Adrienne Pederson, and Nancy Riordan, as well as the other staff from Sandos Westside Community Clinic who took the time to meet with us. We also thank the staff at the State of Louisiana Office of Youth Development and the Jetson Center for Youth, including Ms. Brezina, Dr. Richard Dalton, Ms. Erwin, Dr. Ronald Feinstein, Simon Gonsoulin, Dr. Stewart Gordon, Dr. Rhonda Kendrick, Dr. Seth Kunen, Ms. Lewis, Dr. Macdonald, Philippe Magloire, Dr. Menou, Gene Perkins, and Chef Ron Sonnier and his youth staff in the culinary arts program, as well as the other staff who spent time with us. We appreciate the contributions of the staff at the Adolescent and Sports Medicine Center and the Eating Disorders Clinic at Arkansas Children’s Hospital, including Dr. Bill Bandy, Marian Casey, Dr. Elton Cleveland, Kim Cossey, Brian Cox, Dr. Yancey Craft, Jennie Freyman, Dr. Brian Hardin, Skip Hoggard, Dr. Andrew Martin, Dr. J. Darrell Nesmith, Dr. Tracie Pasold, Dr. Maria Portilla, Cynthia Pumphrey, Dr. Wendy Ward-Begnoche, Dr. Jennifer Woods, and the other staff who met with us, as well as the Central High School football coaches. Thanks are also due to the staff at the Mt. Sinai Adolescent Health Center in New York City, including Dr. Celia Blumenthal, Kelly Celony, Rachel Cymrot, Dr. Angela Diaz, Dr. Paula Elbirt, Dr. Alison Eliscu, zayaini Lavergne-Freedman, Arlette Louden, Dr. Anne Nucci-Sack, Ken Peake, Rich Porter, and Jimmy Rao.

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xvii ACKNOWLEDGMENTS Others at the NRC/IOM—Athena Abdulah, Chantel Fuqua, Stephen Mautner, Matthew McDonough, Matthew Von Hendy, and Dianne Wolman—provided support in various ways to this project. As well, we are indebted to Kirsten Sampson Snyder, DBASSE reports officer, who pa- tiently worked with us through several revisions of this report and DBASSE production editor, Yvonne Wise, who managed the production process through final publication. Robert S. Lawrence, Chair Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development

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Contents Summary 1 1 Setting the Stage 17 2 Adolescent Health Status 52 3 Current Adolescent Health Services, Settings, and Providers 135 4 Improving Systems of Adolescent Health Services 194 5 Preparing a Workforce to Meet the Health Needs of Adolescents 240 6 Health Insurance Coverage and Access to Adolescent Health Services 265 7 Overall Conclusions and Recommendations 293 Appendixes A Acronyms 311 B Harris Interactive Omnibus Survey Questions 314 C Biographical Sketches of Committee Members and Staff 317 Index 329 xix

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Tribute to Debra Delgado This report is dedicated to Debra Delgado, who served as pro- gram executive for The Atlantic Philanthropies on this project until she passed away on December 2, 2007, at the age of 50. Debra was a long-time advocate for children, youth, and fami- lies, adding tremendous value over her lifetime to the work of The Atlantic Philanthropies, The Annie E. Casey Foundation, The Robert Wood Johnson Foundation’s Program Office for School-Based Health Care, the Title X Family Planning Pro- gram for the District of Columbia, Planned Parenthood of Metropolitan Washington, the Los Angeles Free Clinic, and the Watts Health Foundation. Debra influenced many individuals and communities through her advocacy and support for Amer- ica’s most vulnerable children, youth, and families. Debra was a strong and dedicated advocate; a leader; a gentle and loving spirit; a problem solver; a patient mentor; uncommonly wise; wonderfully fun and compassionate; vi- brant, kind, honest, insightful, gracious, elegant, and joyful. Her friends and colleagues miss her tremendously. The committee’s focus and its deliberations were guided by Debra’s insights. This report is dedicated to her memory. xxi

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