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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Childhood Cancer and Functional Impacts Across the Care Continuum. Washington, DC: The National Academies Press. doi: 10.17226/25944.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Childhood Cancer and Functional Impacts Across the Care Continuum Committee on Childhood Cancers and Disability Paul A. Volberding, Carol Mason Spicer, Tom Cartaxo, and Laura Aiuppa, Editors Board on Health Care Services Health and Medicine Division A Consensus Study Report of PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 This activity was supported by Contract/Task Order No. 28321318D00060015/00003 between the National Academy of Sciences and the U.S. Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25944 Additional copies of this publication are available 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 2020 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. Childhood cancer and functional impacts across the care continuum. Washington, DC: The National Academies Press. https://doi.org/10.17226/25944. PREPUBLICATION COPY—Uncorrected Proofs

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. Marcia McNutt 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. John L. Anderson 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 National 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.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs

COMMITTEE ON CHILDHOOD CANCERS AND DISABILITY PAUL A. VOLBERDING (Chair), Professor Emeritus, Department of Epidemiology and Biostatistics, University of California, San Francisco JASON R. FANGUSARO, Director, Developmental Therapeutics Program, Carter S. Martin Endowed Chair, Children’s Healthcare of Atlanta and Aflac Cancer and Blood Disorders Center; Associate Professor of Pediatrics, Emory University School of Medicine JULIA GLADE BENDER, Vice Chair for Clinical Research, Department of Pediatrics, Memorial Sloan Kettering Cancer Center ANDREA HAYES-JORDAN, Professor, Lineberger Cancer Center, Sur- geon-in-Chief, North Carolina Children’s Hospital, Division Chief, Pediatric Surgery, University of North Carolina Health Care BRANDON HAYES-LATTIN, Medical Director, Division of Hematology and Medical Oncology, Oregon Health & Science University TARA HENDERSON, Director, Childhood, Adolescent and Young Adult Cancer Survivor Center; Interim Section Chief, Pediatric Hematology, Oncology and Stem Cell Transplantation, The University of Chicago PAMELA S. HINDS, The William and Joanne Conway Chair in Nursing Research, Children’s National Health System BARBARA L. JONES, University Distinguished Professor and Associate Dean for Health Affairs, Steve Hicks School of Social Work; Chair, Department of Health Social Work, Dell Medical School, The Univer- sity of Texas at Austin JENNIFER I. KOOP, Associate Professor of Neurology and Neurosurgery, Medical College of Wisconsin VALERAE O. LEWIS, John Murray Endowed Professor and Chair, Department of Orthopaedic Oncology, The University of Texas MD Anderson Cancer Center SCOTT L. POMEROY, Bronson Crothers Professor of Neurology, Harvard Medical School; Chair, Department of Neurology, Boston Children’s Hospital DAVID W. PRUITT, Professor, Clinical Pediatrics and Physical Medicine & Rehabilitation, Cincinnati Children’s Hospital Medical Center LESLIE L. ROBISON, Chair, Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital NANCY J. TARBELL, C.C. Wang Professor of Radiation Oncology, Harvard Medical School; Department of Radiation Oncology, Massachusetts General Hospital, Francis H. Burr Proton Therapy Center EMILY S. TONOREZOS, Director, Office of Cancer Survivorship, National Cancer Institute BRIGITTE WIDEMANN, Chief, Pediatric Oncology Branch, National Cancer Institute v PREPUBLICATION COPY—Uncorrected Proofs

Study Staff CAROL MASON SPICER, Study Director LAURA AIUPPA, Senior Program Officer TOM CARTAXO, Associate Program Officer CLAIRE SAUNDERS, Senior Program Assistant (until April 2020) VICTORIA BROWN, Senior Program Assistant (from April 2020) SHARYL NASS, Senior Director, Board on Health Care Services vi PREPUBLICATION COPY—Uncorrected Proofs

Reviewers This Consensus Study Report was 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 National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manu- script remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: LISA R. DILLER, Dana-Farber Cancer Institute SARAH S. DONALDSON, Stanford University STEPHANIE L. FOOKS-PARKER, Children’s Hospital of Philadelphia HOWARD H. GOLDMAN, University of Maryland School of Medicine, Baltimore TODD E. HEATON, Memorial Sloan Kettering Cancer Center SHAWNA V. HUDSON, Rutgers Robert Wood Johnson Medical School and Rutgers Cancer Institute of New Jersey KATARZYNA IBANEZ, Memorial Sloan Kettering Cancer Center MICHAEL B. KASTAN, Duke University KARA M. KELLY, Roswell Park Comprehensive Cancer Center and University at Buffalo Jacobs School of Medicine and Biomedical Sciences vii PREPUBLICATION COPY—Uncorrected Proofs

viii REVIEWERS YASMIN KHAKOO, Memorial Sloan Kettering Cancer Center WENDY LANDIER, The University of Alabama at Birmingham MARSHA NORTZ GRAGERT, Baylor College of Medicine, Texas Children’s Hospital LOGAN G. SPECTOR, University of Minnesota Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the conclusions of this report, nor did they see the final draft before its release. The review of this report was overseen by ROBERT S. LAWRENCE, Johns Hopkins Bloomberg School of Public Health, and ELLEN WRIGHT CLAYTON, Vanderbilt University Medical Center. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the fi- nal content rests entirely with the authoring committee and the National Academies. PREPUBLICATION COPY—Uncorrected Proofs

Acknowledgments The study committee and the project staff of the National Academies of Sciences, Engineering, and Medicine’s Health and Medicine Division take this opportunity to recognize and thank the many individuals who shared their time and expertise to support the committee’s work and inform its deliberations. This study was sponsored by the U.S. Social Security Administration (SSA). We thank Cassandra Assefa, Stephanie Bovell, Gina Clemons, Alayna Ness, Vincent Nibali, Mary Beth Rochowiak, and Mark Warshawsky for their guidance and support. The committee also acknowledges SSA for verifying relevant technical content pertaining to the disability determina- tion process for accuracy. The committee benefited greatly from discussions with individuals who presented at the committee’s open sessions: Nicole M. Alberts, Gregory J. Aune, Megan P. Elam, Kristina K. Hardy, Elliot Krane, Kirsten K. Ness, Christopher J. Recklitis, Leslie L. Robison, Victoria Sardi- Brown, Lisl Schweers, and Stacia Wagner. The committee is grateful to these presenters for volunteering to share their expertise, knowledge, data, and opinions not only with the committee but also with members of the public who participated in the committee’s open sessions. The committee acknowledges the many staff within the Health and Medicine Division who provided support in various ways to this project, including Carol Mason Spicer (study director), Laura Aiuppa (senior pro- gram officer), Tom Cartaxo (associate program officer), Victoria Brown (senior program assistant), Claire Saunders (senior program assistant), Karen Helsing (senior program officer), and Julie Wiltshire (senior finance ix PREPUBLICATION COPY—Uncorrected Proofs

x ACKNOWLEDGMENTS business partner). The committee extends great thanks and appreciation to Sharyl Nass, Health Care Services senior board director, who oversaw the project. Research assistance was provided by Anne Marie Houppert (senior librarian, National Academies). The committee also thanks Rikeenkumar Dhaduk and Kirsten K. Ness at St. Jude Children’s Research Hospital for their assistance in generating the incidence and outcome data from the Surveillance, Epidemiology, and End Results registry. Finally, Rona Brière and Allie Boman are to be credited for the superb editorial assistance they provided in preparing the final report. PREPUBLICATION COPY—Uncorrected Proofs

Contents ACRONYMS AND ABBREVIATIONS xix SUMMARY1 1 INTRODUCTION 15 Context for This Study, 15 Study Charge and Scope, 17 Study Approach, 17 Report Organization, 24 References, 25 2 EPIDEMIOLOGY OF CHILDHOOD CANCER IN THE UNITED STATES 27 Incidence, 27 Mortality and Survival, 34 Cancer-Specific Information, 35 Etiologic Risk Factors, 37 Therapy-Related Morbidity, 41 Findings and Conclusions, 43 References, 44 3 TREATMENT MODALITIES FOR CHILDHOOD CANCERS 47 Pediatric Cooperative Groups, 48 Multimodal Therapies, 48 xi PREPUBLICATION COPY—Uncorrected Proofs

xii CONTENTS Standard Treatment Modalities, 49 Emerging Treatments, 66 Summary, 70 Findings and Conclusions, 70 References, 73 4 CHILDHOOD CANCERS AND FUNCTION 127 Physical Functioning, 129 Cognitive Functioning, 165 Psychosocial and Emotional Functioning, 184 Summary, 190 Findings and Conclusions, 190 References, 193 5 SELECTED HEMATOLOGIC MALIGNANCIES AND HISTIOCYTOSES 245 Overview, 246 Diagnosis, Prognosis, Treatment, and Outcomes by Malignancy, 247 Findings and Conclusions, 256 References, 257 6 SELECTED CENTRAL NERVOUS SYSTEM TUMORS 275 Overview, 275 Diagnosis, Prognosis, Treatment, and Outcomes by Tumor Type, 279 Findings and Conclusions, 288 References, 289 7 SELECTED NON–CENTRAL NERVOUS SYSTEM SOLID TUMORS 303 Overview, 304 Diagnosis, Prognosis, Treatment, and Outcomes by Tumor Type, 305 Findings and Conclusions, 338 References, 339 8 THE TRANSITION FROM ADOLESCENCE TO YOUNG ADULTHOOD 391 The Disability Determination Process, 392 Epidemiology of Cancers in Adolescents and Young Adults, 394 PREPUBLICATION COPY—Uncorrected Proofs

CONTENTS xiii Clinical Differences Between Adolescence and Young Adulthood, 401 Late Effects, 402 Fertility Preservation, 402 Functional Impacts Unique to Adolescence and Young Adulthood, 403 Findings and Conclusions, 406 References, 408 9 OVERALL CONCLUSIONS 413 Overall Conclusions, 413 Selected Findings and Conclusions in Support of the Committee’s Overall Conclusions, 423 APPENDIXES A Public Session Agendas 437 B Epidemiology and Attributes of Specific Childhood Cancers 441 C Selected Resources 493 D Biographical Sketches of Committee Members 497 PREPUBLICATION COPY—Uncorrected Proofs

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Boxes, Figures, and Tables BOXES S-1 Conditions Addressed in the Report, 6 1-1 Statement of Task, 18 2-1 Metrics Used in the Epidemiology of Cancer and/or Disease Outcomes, 28 9-1 Overall Conclusions and Selected Chapter-Specific Findings and Conclusions, 423 FIGURES 1-1 International Classification of Functioning, Disability and Health model of functioning and disability, 20 2-1-A Age-specific annual incidence rates per million population of cancer diagnosed among those aged 0–17 years in the United States overall, 33 2-1-B Age-specific annual incidence rates per million population of cancer diagnosed among those aged 0–17 years in the United States by sex, 33 xv PREPUBLICATION COPY—Uncorrected Proofs

xvi BOXES, FIGURES, AND TABLES 2-1-C Age-specific annual incidence rates per million population of cancer diagnosed among those aged 0–17 years in the United States by White and Black race and Hispanic ethnicity, 33 2-2 Temporal trend in the annual incidence rate of cancer (per 100,000 population) in the United States among those diagnosed at ages 0–15, 34 2-3 Survival for individuals diagnosed with cancer at ages 0–17 in the United States, by year of diagnosis, 35 2-4 Distribution of the cumulative burden of serious, disabling, and life- threatening chronic physical health conditions (severity grades 3 and 4 according to modification of the Common Terminology Criteria for Adverse Events) at 18 and 26 years of age, 42 6-1 Elements of brain anatomy, 277 8-1 Overall annual U.S. incidence of cancer for adolescents and young adults, 395 8-2 Sex-specific annual U.S. incidence of cancer for adolescents and young adults, 395 8-3 Standardized incidence ratios (SIRs) and frequency for secondary malignant neoplasms in survivors of early-AYA (adolescent and young adult) cancer and matched survivors of childhood cancer by attained age and time since diagnosis, 400 TABLES 2-1 Annual Incidence Rates and Proportional Distribution of Cancer Diagnoses Among Those Aged 0–17 in the United States, 30 2-2 5- and 10-Year Survival by Year of Diagnosis for Individuals Diagnosed with Cancer at Ages 0–17 in the United States, 36 2-3 Examples of Syndromes and Cancer Predisposition Genes Associated with Cancers Diagnosed During Childhood, 38 8-1 Annual Incidence of Various Cancers in Adolescents and Young Adults, 396 ANNEX TABLES Annex Table 3-1 Acute and Long-Term Sequelae of Cancer Surgery, 80 Annex Table 3-2 Acute and Long-Term Sequelae of Radiation Therapy, 100 Annex Table 3-3 Acute and Long-Term Sequelae of Different Classes of Chemotherapy Agents, 104 PREPUBLICATION COPY—Uncorrected Proofs

BOXES, FIGURES, AND TABLES xvii Annex Table 3-4 Targeted Therapy Agents: Selected Current (2020) U.S. Food and Drug Administration (FDA) Approved, with Pediatric Labeling, and/or in Development Through Clinical Trials, 118 Annex Table 4-1 Selected Instruments Used to Measure Physical Functioning in Survivors of Childhood Cancer, 220 Annex Table 4-2 Functional Impairments Associated with Amputation and Limb-Sparing Surgery, 228 Annex Table 4-3 Selected Standardized Measures of Cognitive Functioning, 230 Annex Table 4-4 Selected Instruments Used to Measure Psychosocial and Emotional Functioning in Survivors of Childhood Cancer and to Measure Parental Stress, 238 Annex Table 5-1 Selected Hematologic Malignancies and Histiocytoses: Diagnostic and Prognostic Information, 262 Annex Table 5-2 Selected Hematologic Malignancies and Histiocytoses: Treatment Information, 270 Annex Table 6-1 Selected Central Nervous System (CNS) Tumors: Diagnostic and Prognostic Information, 294 Annex Table 6-2 Selected Central Nervous System (CNS) Tumors: Treatment Information, 300 Annex Table 7-1 Selected Non–Central Nervous System (CNS) Solid Tumors: Diagnostic and Prognostic Information, 356 Annex Table 7-2 Selected Non–Central Nervous System (CNS) Solid Tumors: Treatment Information, 378 PREPUBLICATION COPY—Uncorrected Proofs

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Acronyms and Abbreviations ACC adrenocortical carcinoma aCPP grade II atypical choroid plexus papilloma ACTH adrenocortical-stimulating hormone ADH antidiuretic hormone, or vasopressin ALL acute lymphoblastic leukemia ASCO American Society of Clinical Oncology AT/RT atypical teratoid rhabdoid tumor ATC anaplastic thyroid carcinoma ATRA all-trans retinoic acid AVP arginine vasopressin AYA adolescent and young adult BMD bone mineral density BMI body mass index BSI Brief Symptom Inventory CAR chimeric antigen receptor CBC complete blood count CINV chemotherapy-induced nausea and vomiting CIPN chemotherapy-induced peripheral neuropathy CML chronic myelogenous leukemia CNS central nervous system COG Children’s Oncology Group CPC grade III choroid plexus carcinoma CPP grade I choroid plexus papilloma xix PREPUBLICATION COPY—Uncorrected Proofs

xx ACRONYMS AND ABBREVIATIONS CPT choroid plexus tumor CRC colorectal carcinoma CRS cytokine release syndrome CRS-HIPEC cytoreductive surgery and hyperthermic intraperitoneal chemotherapy CRT cranial radiotherapy CSF cerebrospinal fluid CT computerized tomography CVAD central venous access device DIPG diffuse intrinsic pontine glioma DSRCT desmoplastic small round cell tumor DTC differentiated thyroid carcinoma DXA dual-energy x-ray absorpiometry EBRT external beam radiation therapy EDS excessive daytime sleepiness EFS event-free survival ETMR embryonal tumor with multilayered rosettes EVD external ventricular drainage FDA U.S. Food and Drug Administration FDG-PET fluoro-deoxy-glucose positron emission tomography FSH follicle-stimulating hormone FTC follicular thyroid carcinoma GCT germ cell tumor GFR glomerular filtration rate GH growth hormone HBV hepatitis B virus HCC hepatocellular carcinoma HCV hepatitis C virus HGG high-grade glioma HSC highly specialized center ICF  International Classification of Functioning, Disability and Health ICI immune checkpoint inhibitor IGHG International Guideline Harmonization Group INRGSS International Neuroblastoma Risk Group Staging System INSS International Neuroblastoma Staging System IT intrathecal PREPUBLICATION COPY—Uncorrected Proofs

ACRONYMS AND ABBREVIATIONS xxi LDH lactate dehydrogenase LGG low-grade glioma LH luteinizing hormone LOH loss of heterozygosity MEN multiple endocrine neoplasia MIBG metaiodobenzylguanidine MPNST malignant peripheral nerve sheath tumor MRI magnetic resonance imaging MTC medullary thyroid carcinoma MTX methotrexate NCI National Cancer Institute NF1 neurofibromatosis type 1 NGGCT non-germiomatous germ cell tumor NOS not otherwise specified NRSTS non-rhabdomyosarcoma soft tissue sarcoma ON osteonecrosis OS overall survival PCA patient-controlled analgesia pump PDQ Physician Data Query® PET positron emission tomography PICC peripherally inserted central catheter PNST peripheral nerve sheath tumor POSTTEXT POST-Treatment EXTent of disease PRETEXT PRE-Treatment EXTent PROMIS  Patient-Reported Outcomes Measurement Information System PTC papillary thyroid carcinoma PTSD posttraumatic stress disorder RCC renal cell carcinoma RFA radiofrequency ablation RFC residual functional capacity RMS rhabdomyosarcoma ROM range of motion SC specialized center SCT stem cell transplant SEER Surveillance, Epidemiology, and End Results Program SIR standardized incidence ratio PREPUBLICATION COPY—Uncorrected Proofs

xxii ACRONYMS AND ABBREVIATIONS SLNB sentinel lymph node biopsy SMN secondary malignant neoplasm SN subsequent neoplasm SRS stereotactic radiosurgery SSA U.S. Social Security Administration SSDI Social Security Disability Insurance SSI Supplemental Security Income STS soft-tissue sarcoma T3 triiodothyronine T4 serum elevated free thyroxine TACE transarterial chemoembolization t-AML therapy-related acute myeloid leukemia tAML therapy-related myelodysplastic disorder t-MDS myelodysplastic syndrome TSH thyroid-stimulating hormone UCLA University of California, Los Angeles UESL undifferentiated embryonal sarcoma of the liver UPS undifferentiated pleomorphic sarcoma VPS ventriculoperitoneal shunt WDF well-differentiated fetal histology WHO World Health Organization PREPUBLICATION COPY—Uncorrected Proofs

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Since the late 1960s, the survival rate in children and adolescents diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Although the improvements in survival are encouraging, they have come at the cost of acute, chronic, and late adverse effects precipitated by the toxicities associated with the individual or combined use of different types of treatment (e.g., surgery, radiation, chemotherapy). In some cases, the impairments resulting from cancer and its treatment are severe enough to qualify a child for U.S. Social Security Administration disability benefits.

At the request of Social Security Administration, Childhood Cancer and Functional Impacts Across the Care Continuum provides current information and findings and conclusions regarding the diagnosis, treatment, and prognosis of selected childhood cancers, including different types of malignant solid tumors, and the effect of those cancers on children’s health and functional capacity, including the relative levels of functional limitation typically associated with the cancers and their treatment. This report also provides a summary of selected treatments currently being studied in clinical trials and identifies any limitations on the availability of these treatments, such as whether treatments are available only in certain geographic areas.

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