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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

COMPREHENSIVE CANCER CARE
FOR
CHILDREN AND THEIR FAMILIES

Summary of a Joint Workshop by
the Institute of Medicine and the American Cancer Society

Sharyl J. Nass and Margie Patlak, Rapporteurs

National Cancer Policy Forum

Board on Health Care Services

Institute of Medicine

images

THE NATIONAL ACADEMIES PRESS

Washington, DC

www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

THE NATIONAL ACADEMIES PRESS   500 Fifth Street, NW   Washington, DC 20001

This activity was co-sponsored by the American Cancer Society. The project was also supported by Contract No. HHSN261200900003C and Contract No. HHSN263201200074I (Task Order No. HHSN26300052) between the National Academy of Sciences and the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the American Association for Cancer Research, American Society for Radiation Oncology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, AstraZeneca, Bristol-Myers Squibb, C-Change, Cancer Support Community, CEO Roundtable on Cancer, EMD Serono, Helsinn Healthcare SA, LIVESTRONG Foundation, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Sanofi Oncology.

International Standard Book Number-13: 978-0-309-37441-5
International Standard Book Number-10: 0-309-37441-3

Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2015 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

Cover images contributed by Jennifer Cullen, Wendy Lindberg, Melinda Marchiano, and Victoria Sardi-Brown.

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive cancer care for children and their families: Summary of a joint workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

images

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Ralph J. Cicerone is president.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

WORKSHOP PLANNING COMMITTEE1

JOANNE WOLFE (Chair), Chief, Division of Pediatric Palliative Care, Department of Oncology and Palliative Care, Dana-Farber Cancer Institute; Director of Palliative Care, Boston Children’s Hospital; Associate Professor of Pediatrics, Harvard Medical School

BETH ANNE BABER, Co-Founder and Chief Executive Officer, The Nicholas Conor Institute for Pediatric Cancer Research

OTIS W. BRAWLEY, Chief Medical Officer, American Cancer Society

CHRIS FEUDTNER, The Steven D. Handler Chair of Medical Ethics, Director, Department of Medical Ethics, The Children’s Hospital of Philadelphia

PATRICIA A. GANZ, Distinguished University Professor, University of California, Los Angeles (UCLA), Fielding School of Public Health, David Geffen School of Medicine at UCLA, Jonsson Comprehensive Cancer Center

PAMELA HINDS, The William and Joanne Conway Chair in Nursing Research; Director, Department of Nursing Research and Quality Outcomes; Associate Director, Center for Translational Science, Children’s National Health System

MELISSA HUDSON, Director, Cancer Survivorship Division; Co-Leader, Cancer Prevention & Control Program, St. Jude Children’s Research Hospital

GREGORY REAMAN, Associate Director for Oncology Sciences, Center for Drug Evaluation and Research, U.S. Food and Drug Administration

ERIC SANDLER, Chief, Pediatric Hematology/Oncology/Bone Marrow, Division of Pediatric Hematology/Oncology Clinic, Nemours Children’s Clinic

LORI WIENER, Pediatric Oncology Branch; Head, Pediatric Psychosocial Support and Research Program, Center for Cancer Research, National Cancer Institute

ROBIN YABROFF, Epidemiologist, Health Services and Economics Branch, Applied Research Program, National Cancer Institute, Division of Cancer Control and Population Sciences

___________________

1 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

IOM Staff

SHARYL J. NASS, Director, National Cancer Policy Forum

CELYNNE BALATBAT, Research Assistant (April–June 2015)

PATRICK ROSS, Research Assistant (from June 2015)

SARA THARAKAN, Research Assistant (until April 2015)

HANNAH DURING, Senior Program Assistant

RAZAN ELTILIB, Summer Intern

ACS Staff

REBECCA KIRCH, Director, Quality of Life and Palliative Care

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

NATIONAL CANCER POLICY FORUM1

MICHAEL CALIGIURI (Chair), Chief Executive Officer, James Cancer Hospital and Solove Research Institute; Director, Ohio State University Comprehensive Cancer Center

PATRICIA A. GANZ (Vice Chair), Distinguished University Professor, University of California, Los Angeles (UCLA), Fielding School of Public Health, David Geffen School of Medicine at UCLA, Jonsson Comprehensive Cancer Center

AMY P. ABERNETHY, Chief Medical Officer and Senior Vice President for Oncology, Flatiron Health; Professor, Division of Medical Oncology, Duke University School of Medicine; Director, Center for Learning Health Care, Duke Clinical Research Institute

LUCILE ADAMS-CAMPBELL, Professor of Oncology, Associate Director for Minority Health and Health Disparities Research, Georgetown University Lombardi Cancer Center

KENNETH ANDERSON, Kraft Family Professor of Medicine, American Cancer Society Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute

LOYCE PACE BASS, Health Policy Director, LIVESTRONG Foundation

MONICA BERTAGNOLLI, Professor of Surgery, Harvard University Medical School

OTIS BRAWLEY, Chief Medical Officer and Executive Vice President, American Cancer Society

CARLTON BROWN, Director of Professional Services, Oregon Nurses Association, and Past President, Oncology Nursing Society

SERGIO CANTOREGGI, Chief Scientific Officer and Global Head of Research and Development, Helsinn Group

ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network

GREGORY CURT, U.S. Medical Science Lead, AstraZeneca

___________________

1 Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

WILLIAM S. DALTON, Chief Executive Officer, M2Gen Personalized Medicine Institute, Moffitt Cancer Center; Chair, American Association for Cancer Research Science Policy & Legislative Affairs Committee

GWEN DARIEN, Executive Vice President, Programs and Services, Cancer Policy Institute, Cancer Support Community

WENDY DEMARK-WAHNEFRIED, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center

JAMES DOROSHOW, Deputy Director, National Cancer Institute

CAROL A. HAHN, Associate Professor of Radiation Oncology, Duke University Medical Center; Medical Director of Radiation Oncology, Duke Raleigh Hospital; Clinical Affairs and Quality Council Chair, American Society for Radiation Oncology

LORI HOFFMAN HÕGG, Veterans Health Administration National Oncology Clinical Advisor, Office of Nursing Services; Cancer Program Director, Albany Stratton Veterans Affairs Medical Center

SAMIR N. KHLEIF, Director, Georgia Health Sciences University Cancer Center, Georgia Regents University Cancer Center

RICHARD A. LARSON, Hematology/Oncology Director, University of Chicago

MICHELLE M. LE BEAU, Arthur and Marian Edelstein Professor of Medicine, Director, Comprehensive Cancer Center, University of Chicago

JOSEPH LEVEQUE, Vice President, Head, U.S. Medical–Oncology, Bristol-Myers Squibb

SHARI LING, Deputy Chief Medical Officer, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services

GRETA MASSETTI, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention

DANIEL R. MASYS, Affiliate Professor, Biomedical Informatics, University of Washington

MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer

RICHARD PAZDUR, Director, Office of Oncology and Hematology Products, U.S. Food and Drug Administration

STEVEN PIANTADOSI, Phase One Foundation Endowed Chair and Director, Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

JENNIFER A. PIETENPOL, Director, Vanderbilt-Ingraham Cancer Center, Benjamin F. Byrd, Jr., Professor of Oncology, Professor of Biochemistry, Vanderbilt University

ANDREW SCHIERMEIER, Senior Vice President, Head of Global Oncology, Merck Serono

RICHARD SCHILSKY, Chief Medical Officer, American Society of Clinical Oncology

DEBORAH SCHRAG, Chief, Division of Population Sciences, Professor of Medicine, Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School

YA-CHEN TINA SHIH, Professor of Health Economics, Chief, Section of Cancer Economics and Policy, Department of Health Services Research, University of Texas MD Anderson Cancer Center

ELLEN V. SIGAL, Chair and Founder, Friends of Cancer Research

ELIZABETH THOMPSON, President and Chief Executive Officer, C-Change

RALPH WEICHSELBAUM, Daniel K. Ludwig Professor and Chair, Department of Radiation Oncology, Director, Ludwig Center for Metastasis Research, The University of Chicago Medical Center

GEORGE J. WEINER, Director, Holden Comprehensive Cancer Center, University of Iowa; President, Association of American Cancer Institutes

National Cancer Policy Forum Staff

SHARYL J. NASS, Forum Director and Director, Board on Health Care Services

CELYNNE BALATBAT, Research Assistant (April–June 2015)

PATRICK ROSS, Research Assistant (from June 2015)

SARA THARAKAN, Research Assistant (until April 2015)

HANNAH DURING, Senior Program Assistant

PATRICK BURKE, Financial Associate

RAZAN ELTILIB, Summer Intern

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

Reviewers

This workshop summary has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary:

SMITA BHATIA, University of Alabama at Birmingham

JACQUELINE CASILLAS, University of California, Los Angeles

JASON L. FREEDMAN, The Children’s Hospital of Philadelphia

MARY JO KUPST, Medical College of Wisconsin

JENNIFER CULLEN MEYER, Center for Prostate Disease Research

SUSAN K. PARSONS, Tufts Medical Center

Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this report was overseen by ROGER C. HERDMAN. He was responsible for making certain that

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

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 rapporteurs and the institution.

Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

Acknowledgments

We are very grateful to Rebecca Kirch for her many contributions to the planning and orchestration of this workshop.

We thank the American Cancer Society for generously co-sponsoring this workshop. Support from the many annual sponsors of the Institute of Medicine’s National Cancer Policy Forum is crucial to the work of the forum. Current sponsors include the Centers for Disease Control and Prevention, National Cancer Institute/National Institutes of Health, American Association for Cancer Research, American Cancer Society, American Society for Radiation Oncology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, AstraZeneca, Bristol-Myers Squibb, C-Change, Cancer Support Community, CEO Roundtable on Cancer, EMD Serono, Helsinn Healthcare SA, LIVESTRONG Foundation, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Sanofi Oncology.

The forum wishes to express its gratitude to the expert speakers whose presentations helped define the challenges and opportunities in delivering comprehensive cancer care for pediatric cancer patients and their families. The forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

Acronyms

ALL

acute lymphoblastic leukemia

AML

acute myelogenous leukemia

ASCO

American Society of Clinical Oncology

AYA

adolescent and young adult

CAPC

Center to Advance Palliative Care

CCSS

Childhood Cancer Survivor Study

CMS

Centers for Medicare & Medicaid Services

COG

Children’s Oncology Group

FDA

U.S. Food and Drug Administration

IOM

Institute of Medicine

LLS

Leukemia & Lymphoma Society

NCI

National Cancer Institute

PAT

Psychosocial Assessment Tool

PHIS

Pediatric Health Information Systems

PPCR

Pediatric Proton Consortium Registry

PPPHM

Pediatric Psychosocial Preventative Health Model

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×

PRO

patient-reported outcome

PRO-CTCAE

Pediatric Patient-Reported Outcomes Common Terminology Criteria for Adverse Events

PROMIS

Patient Reported Outcomes Measurement Information System

TAP

Therapy Acceleration Program

UAB

University of Alabama at Birmingham

UCLA University of California, Los Angeles
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.
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Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system.

To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children's Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.

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