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
THE NATIONAL ACADEMIES PRESS
Washington, DC
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.
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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.
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
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.
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
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
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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
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.
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.
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Contents
OVERVIEW OF THE CURRENT LANDSCAPE IN PEDIATRIC CANCER RESEARCH AND TREATMENT
Trends and Challenges in Developing Drugs for Pediatric Cancer
INTEGRATING PEDIATRIC PALLIATIVE CARE: ENSURING CHILD AND FAMILY WELL-BEING ALONG THE CONTINUUM
Generalist Plus Specialist Palliative Care
End-of-Life Care and Bereavement Care
Policy Opportunities to Improve Pediatric Palliative Care Across the Care Continuum
PSYCHOSOCIAL CHALLENGES AND OPPORTUNITIES
Psychosocial Needs for Pediatric Patients
Psychosocial Needs of Families
Predicting and Screening for Distress
Parental Interventions to Alleviate Distress
The State of the Science for Pediatric PROs
Screening for and Preventing Complications
Transitioning Off Treatment to Follow-Up Care
Transitioning to Adult Follow-Up Care
PEDIATRIC ONCOLOGY DATA COLLECTION AND REGISTRIES
Integrating Databases for Research
Pediatric Proton Consortium Registry
Boxes, Figures, and Tables
BOXES
1 Suggestions Made by Individual Workshop Participants
2 Leukemia & Lymphoma Society—Funding Research
3 Parent Reflections on Suffering
4 Parent Perspectives on Cancer Treatment
5 Patient Reported Outcomes Measurement Information System (PROMIS)
6 Pediatric Patient Reported Outcomes Common Terminology Criteria for Adverse Events (PRO-CTCAE)
7 A Pediatric Cancer Survivor’s Perspective
FIGURES
1 Model of pediatric palliative care delivery across the care continuum
2 Pediatric Psychosocial Preventative Health Model
3 Therapeutic exposures and adverse events
4 Chronic conditions in adult survivors of childhood cancer
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 |
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 |