Long-Term Follow-Up Guidelines

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1 Children s Oncology Group Long-Term Long-Term Follow-Up Guidelines Follow-Up for Survivors of Childhood, Adolescent, Guidelines and Young Adult Cancer Version 4.0 October 2013 for Survivors of Childhood, Adolescent, and Young Adult Cancers Version 4.0 October 2013 Copyright 2013 Children s Oncology Group All rights reserved worldwide

2 Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Version 4.0 October Copyright 2013 Children s Oncology Group All rights reserved worldwide

3 Contents Content Outline vi Abstract vii Disclaimer and Notice of Proprietary Rights viii Guidelines Panel of Experts x Guidelines Task Force Membership xi Guidelines Health Link Authors xvi Guidelines Health Link Reviewers xviii Guidelines Development Task Force Initial Versions xix Guidelines Reviewers Initial Versions xx Introductory Material xxii Introduction xxiii Explanation of Scoring xxviii Instructions for Use xxix New to Version 4.0 xxxiv tion Page Gender Effect Any Cancer Experience 1 2 Adverse psychosocial/qol effects 2 4 Mental health disorders 3 5 y behaviors 4 6 Psychosocial disability due to pain 5 7 Fatigue 6 8 Limitations in healthcare and insurance access Blood/Serum Products 7 9 Chronic hepatitis B 8 10 Chronic hepatitis C 9 11 HIV infection Chemotherapy Dental abnormalities Male Gonadal dysfunction (testicular): Reduced fertility Male Gonadal dysfunction (testicular): Testosterone deficiency COG LTFU Guidelines Page ii tion Page Gender Effect Female Gonadal dysfunction (ovarian) Acute myeloid leukemia; myelodysplasia Pulmonary fibrosis Cataracts Urinary tract toxicity Bladder malignancy Renal toxicity Ototoxicity Peripheral sensory neuropathy; Renal toxicity (n/a) [Removed from v4: Dyslipidemia] Neurocognitive deficits Clinical leukoencephalopathy No known late effects Hepatic dysfunction; veno-occlusive disease (VOD) Reduced bone mineral density (BMD) Renal toxicity: glomerular injury; hypertension Hepatic dysfunction Neurocognitive deficits Clinical leukoencephalopathy Acute myeloid leukemia Male Cardiac toxicity Female Cardiac toxicity Pulmonary toxicity No known late effects Dactinomycin Reduced bone mineral density (BMD) Osteonecrosis (avascular necrosis) Cataracts No known late effects Asparaginase Peripheral sensory or motor neuropathy Version 4.0 October 2013 Contents

4 Contents (cont) tion Page Gender Effect Vasospastic attacks (Raynaud s phenomenon) Acute myeloid leukemia Radiation ondary benign or malignant neoplasm Dysplastic nevi; skin cancer Dermatologic changes Bone malignancies Brain tumor (benign or malignant) Neurocognitive deficits Clinical leukoencephalopathy Cerebrovascular complications Craniofacial abnormalities Chronic sinusitis Overweight; obesity (n/a) [Removed from v4: Metabolic syndrome] Growth hormone deficiency Male Precocious puberty Female Precocious puberty Male Hyperprolactinemia Female Hyperprolactinemia Central hypothyroidism Male Gonadotropin deficiency Female Gonadotropin deficiency Central adrenal insufficiency Cataracts Ocular toxicity Ototoxicity (conductive hearing loss) Ototoxicity (sensorineural hearing loss) Xerostomia; salivary gland dysfunction Dental abnormalities COG LTFU Guidelines Page iii tion Page Gender Effect Osteoradionecrosis Thyroid nodules Thyroid cancer Hypothyroidism Hyperthyroidism Carotid artery disease Subclavian artery disease Female Breast cancer Female Breast tissue hypoplasia Pulmonary toxicity Male Cardiac toxicity Female Cardiac toxicity Functional asplenia Esophageal stricture Impaired glucose metabolism/diabetes mellitus Dyslipidemia Hepatic fibrosis; cirrhosis; focal nodular hyperplasia Cholelithiasis Bowel obstruction Chronic enterocolitis; fistula, strictures Colorectal cancer Renal toxicity; renal insufficiency; hypertension Hemorrhagic cystitis Urinary tract toxicity Bladder malignancy Female Uterine vascular insufficiency Female Gonadal dysfunction (ovarian) Female Vaginal fibrosis/stenosis Male Gonadal dysfunction (testicular): Reduced fertility Version 4.0 October 2013 Contents

5 Contents (cont) tion Page Gender Effect Male Gonadal dysfunction (testicular): Testosterone deficiency/ insufficiency Musculoskeletal growth problems Scoliosis/kyphosis (n/a) COG LTFU Guidelines Page iv [Removed from v4: Kyphosis] Radiation-induced fracture 129 TBI-related Hematopoietic Cell Transplant Myelodysplasia; acute myeloid leukemia Male Solid tumors Female Solid tumors Lymphoma Hepatic toxicity Osteonecrosis (avascular necrosis) Reduced bone mineral density (BMD) Renal toxicity Dermatologic toxicity Xerophthalmia (keratoconjunctivitis sicca) Xerostomia; salivary gland dysfunction; dental caries; periodontal disease; oral cancer (squamous cell carcinoma) Pulmonary toxicity; bronchiolitis obliterans; chronic bronchitis; bronchiectasis Immunologic complications Functional asplenia Esophageal stricture Female Vaginal fibrosis/stenosis Joint contractures Surgery Amputation-related complications Thrombosis; vascular insufficiency; infection of retained cuff or line tract Cystectomy-related complications tion Page Gender Effect Impaired cosmesis; poor prosthetic fit; orbital hypoplasia Female Pelvic floor dysfunction; urinary incontinence; sexual dysfunction Adhesions; bowel obstruction Complications related to limb sparing procedure Male Hydrocele; renal toxicity Female Renal toxicity Neurocognitive deficits Motor and/or sensory deficits Seizures Hydrocephalus; shunt malfunction Overweight/obesity Diabetes insipidus Neurogenic bladder; urinary incontinence Neurogenic bowel; fecal incontinence Male Psychosexual dysfunction (male) Female Psychosexual dysfunction (female) Scoliosis/Kyphosis Female Oophoropexy-related complications Female Premature menopause Female Hypogonadism; infertility Male Gonadal dysfunction (testicular): reduced fertility; testosterone insufficiency Male Gonadal dysfunction (testicular): infertility; testosterone deficiency Urinary incontinence; urinary tract obstruction Fecal incontinence Male Sexual dysfunction (male) Female Sexual dysfunction (female) (n/a) [Removed from v4: Hydrocele] Asplenia Pulmonary dysfunction Version 4.0 October 2013 Contents

6 Contents (cont) tion Page Gender Effect Scoliosis/Kyphosis Hypothyroidism Other Modalities Lacrimal duct atrophy Hypothyroidism Hypothyroidism Insufficient information currently available regarding late effects of biological agents Cancer Screening Guidelines Female Breast cancer Female Cervical cancer Colorectal cancer Female Endometrial cancer Lung cancer Oral cancer Male Prostate cancer Skin cancer Male Testicular cancer General Health Screening (USPSTF link) COG LTFU Guidelines Page v Version 4.0 October 2013 Contents

7 COG Long-Term Follow-Up Guidelines Content Outline Long-Term Follow-Up Guidelines Abstract Disclaimer Contributors Panel of Experts Task Force Membership Health Link Authors and Reviewers Guideline Development Task Force Initial Versions Reviewers Initial Versions Introductory Material Introduction Explanation of Scoring Instructions for Use New to this Version of the COG LTFU Guidelines Long-Term Follow-Up Guidelines Appendix I: Materials for Clinical Application of LTFU Guidelines Reference Materials Abbreviations Chemotherapy Agents Radiation Fields Defined Summary of Cancer Treatment Summary of Cancer Treatment Introduction Template for Summary of Cancer Treatment (Abbreviated) Template for Summary of Cancer Treatment (Comprehensive) Key for Completing Summary of Cancer Treatment (Comprehensive Version) Tools for Guideline Application Patient-Specific Guideline Identification Tool Health Link Index by Guideline tion Number Appendix II: (Patient Education Materials) Index by Title Suggested Citations for COG Long-Term Follow-Up Guidelines Guidelines Children s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers, Version 4.0. Monrovia, CA: Children s Oncology Group; October 2013; Available on-line: Guidelines Methodology Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, Darling J, Armstrong FD, Blatt J, Constine LS, Freeman CR, Friedman DL, Green DM, Marina N, Meadows AT, Neglia JP, Oeffinger KC, Robison LL, Ruccione KS, Sklar CA, Hudson MM. Development of risk-based guidelines for pediatric cancer survivors: the Children s Oncology Group long-term follow-up guidelines from the Children s Oncology Group Late Committee and Nursing Discipline. J Clin Oncol 2004; 22(24): Background and Application Eshelman D, Landier W, Sweeney T, Hester AL, Forte K, Darling J & Hudson MM. Facilitating care for childhood cancer survivors: integrating Children s Oncology Group long-term follow-up guidelines and health links in clinical practice. J Pediatr Oncol Nurs 2004; 21(5): COG LTFU Guidelines Page vi Version 4.0 October 2013 Content Outline

8 Abstract Version 4.0 The Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Release date: October 2013 Status: Updated from Version 3.0 incorporating modifications based on recommendations from the Children s Oncology Group s Long- Term Follow-Up Guideline Core Committee and its ten associated multidisciplinary Task Forces. Overview: These risk-based, exposure-related clinical practice guidelines provide recommendations for screening and management of late effects in survivors of pediatric malignancies. ( Pediatric malignancies are defined as those malignancies commonly associated with the pediatric population that may arise during childhood, adolescence or young adulthood.) A complementary set of patient education materials, known as accompany the guidelines in order to enhance patient follow-up visits and broaden the application of these guidelines. Additional accompanying materials include detailed instructions, templates for cancer treatment summary forms, a radiation reference guide, and a tool to assist in identifying guideline applicability for individual patients based on therapeutic exposures. The information provided in these guidelines is important for primary healthcare providers in the fields of pediatrics, oncology, internal medicine, family practice, and gynecology, as well as subspecialists in many fields. Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance follow-up care provided to survivors of pediatric malignancies throughout their lifespan. Source: Version 4.0 of the Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, and related, can be downloaded in their entirety from COG LTFU Guidelines Page vii Version 4.0 October 2013 Abstract

9 Disclaimer and Notice of Proprietary Rights Introduction to Late Guidelines and : The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying were developed by the Children s Oncology Group as a collaborative effort of the Late Committee and Nursing Discipline and are maintained and updated by the Children s Oncology Group s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. For Informational Purposes Only: The information and contents of each document or series of documents made available by the Children s Oncology Group relating to late effects of cancer treatment and care or containing the title Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers or the title Health Link, whether available in print or electronic format (including any digital format, transmission, or download from the website), shall be known hereinafter as Informational Content. All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or healthcare provider. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified healthcare provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children s Oncology Group, or affiliated party or member of the Children s Oncology Group. No Claim to Accuracy or Completeness: While the Children s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children s Oncology Group and Related Parties: No liability is assumed by the Children s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) Indemnified Parties include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children s Oncology Group retains exclusive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. COG LTFU Guidelines Page viii Version 4.0 October 2013 Disclaimer

10 Contributors

11 Long-Term Follow-Up Guidelines Panel of Experts The following members of the Children s Oncology Group Long-Term Follow-Up (LTFU) Guidelines Core Committee participated in comprehensive review and scoring of Version 4.0 of the Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers: Melissa M. Hudson, MD Co-Chair COG LTFU Guidelines Core Committee Member, Department of Oncology Director, Cancer Survivorship Division Co-Leader, Cancer Prevention & Control Program St. Jude Children s Research Hospital Memphis, TN Wendy Landier, PhD, RN, CPNP, CPON Co-Chair COG LTFU Guidelines Core Committee Clinical Director, Center for Cancer Survivorship City of Hope Comprehensive Cancer Center Duarte, CA Louis S. Constine, MD, FASTRO Co-Chair COG LTFU Guidelines Core Committee Professor of Radiation Oncology and Pediatrics Vice Chair, Department of Radiation Oncology James P. Wilmot Cancer Center University of Rochester Medical Center Rochester, NY Smita Bhatia, MD, MPH Co-Chair COG LTFU Guidelines Core Committee Professor and Chair, Department of Population Sciences City of Hope National Medical Center Associate Director, Population Research City of Hope Comprehensive Cancer Center Duarte, CA Saro Armenian, DO, MPH Chair, COG Survivorship and Outcomes Committee Assistant Professor, Department of Population Sciences City of Hope Comprehensive Cancer Center Duarte, CA F. Daniel Armstrong, PhD Professor and Associate Chair, Department of Pediatrics Director, Mailman Center for Child Development University of Miami School of Medicine Miami, FL K. Scott Baker, MD, MS Professor of Pediatrics Director, Pediatric Blood and Marrow Transplant Program and Cancer Survivor Program Seattle Children s Hospital Seattle, WA Joan Darling, PhD COG Patient Advocacy Committee Representative Lincoln, NE Daniel M. Green, MD Member, Departments of Oncology and Epidemiology and Cancer Control St. Jude Children s Research Hospital Memphis, TN Nina Kadan-Lottick, MD, MSPH Associate Professor Department of Pediatrics Yale University School of Medicine New Haven, CT Matthew J. Krasin, MD Associate Member Radiological Sciences St. Jude Children s Research Hospital Memphis, TN Marcia Leonard, RN, PNP Coordinator, Late Program C. S. Mott Children s Hospital University of Michigan Ann Arbor, MI Anna T. Meadows, MD Professor of Pediatrics University of Pennsylvania School of Medicine Director, Follow-Up Program The Children s Hospital of Philadelphia Philadelphia, PA Paul Nathan, MD, MSc, FRCPC Director, Aftercare Program Hematology/Oncology The Hospital for Sick Children Toronto, Ontario, Canada Joseph P. Neglia, MD, MPH Professor of Pediatrics Division of Hematology, Oncology, Blood and Marrow Transplantation Department Head, Pediatrics University of Minnesota School of Medicine Minneapolis, MN Kirsten Ness, PT, PhD Associate Member, Departments of Epidemiology and Cancer Control and Pediatric Medicine St. Jude Children s Research Hospital Memphis, TN Kevin C. Oeffinger, MD Director, Living Beyond Cancer Program Memorial Sloan-Kettering Cancer Center New York, NY Leslie L. Robison, PhD Chair, Epidemiology and Cancer Control St. Jude Children s Research Hospital Memphis, TN Charles A. Sklar, MD Director, Long-Term Follow-Up Program Memorial Sloan Kettering Cancer Center New York, NY Julia Steinberger, MD, MS Professor, Division of Cardiology Department of Pediatrics University of Minnesota School of Medicine Minneapolis, MN COG LTFU Guidelines Page x Version 4.0 October 2013 Panel of Experts

12 Guidelines Task Force Membership Task Force Task Force Members Institution Expertise Cardiovascular Pulmonary M. Jacob Adams, MD, MPH Saro Armenian, DO, MPH, Chair Gregory Aune, MD, PhD Ming Hui Chen MD, MMSc Robert Goldsby, MD Daniel Green, MD David Hodgson, MD Hiroto Inaba, MD Charlene Maxen, RN, CNP, CPON Kathleen Meeske, PhD, RN Sadhna Shankar, MD, MPH, Chair Julia Steinberger, MD Dennis Stokes, MD, MPH Rajkumar Venkatramani, MD University of Rochester City of Hope University of Texas Health Science Center, San Antonio Brigham and Women s Hospital UCSF School of Medicine St. Jude Children s Research Hospital Princess Margaret Hospital St. Jude Children s Research Hospital Children s Hospital Medical Center of Akron Children s Hospital Los Angeles Children s National Medical Center University of Minnesota Medical School Le Bonheur Children s Hospital Children s Hospital Los Angeles Epidemiology, Patient advocacy Pediatric oncology Pediatric oncology Medical oncology Pediatric oncology Pediatric oncology Radiation oncology Pediatric oncology Nursing Nursing Pediatric oncology Pediatric cardiology Pediatric pulmonology Pediatric oncology Endocrine Reproductive Lillian R. Meacham, MD, Chair Children s Healthcare of Atlanta/Emory University Pediatric endocrinology Endocrine Reproductive: Bone mineral density Obesity Insulin resistance Endocrine Reproductive: Ovarian Jacqueline Casillas, MD Wassim Chemaitilly, MD Eric Chow, MD, MPH Cindy Cochran, RN, MSN Kristy Gayle Devine, BA Kimberley Dilley, MD, MPH, Silo Leader Natia Esiashvili, MD Dana Hardin, MD Nobuko Hijiya, MD Sue Kaste, DO Caroline Laverdiere, MD Goli Mostoufi-Moab, MD Susan Shannon, RN, MSN, CPNP Rona Sonabend, MD Jacqueline Casillas, MD Mary Dwyer, MBBS Daniel Green, MD Nobuko Hijiya, MD Wendy Hobbie, RN, MSN, CRNP Amy Jacobson, RN, NP-BC Marcia Leonard, RN, CPNP Jennifer Levine, MD Wendy M. Likes, DNSc, ARNP-BC Monika Metzger, MD, MSc, Silo Leader Briana Patterson, MD, MSc, Silo Leader Mattel Children s Hospital UCLA St. Jude Children s Research Hospital Seattle Children s Hospital University of Texas Southwestern Medical Center Children s Oncology Group Ann & Robert H. Lurie Children s Hospital of Chicago Children s Healthcare of Atlanta/Emory University Nationwide Children s Hospital Ann & Robert H. Lurie Children s Hospital of Chicago St. Jude Children s Research Hospital Centre Hospitalier Universitaire Sainte-Justine Children s Hospital of Philadelphia Miller Children s Hospital Baylor College of Medicine Mattel Children s Hospital UCLA Royal Children s Hospital St. Jude Children s Research Hospital Ann & Robert H. Lurie Children s Hospital of Chicago Children s Hospital of Philadelphia UCLA-LIVESTRONG Survivorship Center of Excellence C. S. Mott Children s Hospital Columbia University Medical Center University of Tennessee Health Science Center St. Jude Children s Research Hospital Children s Healthcare of Atlanta/Emory University Pediatric oncology Pediatric endocrinology Pediatric oncology Nursing Patient advocacy Pediatrics Radiation oncology Pediatric endocrinology Pediatric oncology Pediatric radiology Pediatric oncology Pediatric endocrinology/oncology Nursing Pediatric endocrinology Pediatric oncology Radiation oncology Pediatric oncology Pediatric oncology Nursing Family medicine Nursing Pediatric oncology Nursing, Gynecologic oncology Pediatric oncology Pediatric endocrinology COG LTFU Guidelines Page xi Version 4.0 October 2013 Task Force Membership

13 Task Force Membership (cont) Task Force Task Force Members Institution Expertise Endocrine Reproductive: Pituitary Adrenal Thyroid Endocrine Reproductive: Testicular Gastrointestinal Hepatic Oral/Dental Nathalie Alos, MD Christine Chordas, RN, MSN Laurie Cohen, MD Adam Esbenshade, MD Wendy Hobbie, RN, MSN, CRNP Briana Patterson, MD, MSc Jill Simmons, MD, Silo Leader Stacey Urbach, MD Gregory Charles Wheeler, MBBS FRANZCR Laurie Cohen, MD Louis S. Constine, MD Daniel Green, MD Nobuko Hijiya, MD Lisa Kenney, MD, Silo Leader Eileen Lind, RN, MSN, CPNP Barbara Lockhart, RN, MSN, CPNP Monika Metzger, MD, MSc Margarett Shnorhavorian, MD, MPH Soraya Beiraghi, DDS Sharon Castellino, MD, MSH, Chair Joan Darling, PhD Andrew Davidoff, MD Karen Effinger, MD Cherry Estilo, DMD Melissa M. Hudson, MD Sue Kaste, DO Jennifer Magee, DMD Kevin McMullen, MD Cesar Migliorati, DDS, MS, PhD Andrew Muir, MD, MSH Man Wai Ng, DDS, MPH John Petty, MD Melissa Rayburg Jefferson, MD Kathy Ruble, PhD, RN, CPNP Marie-Ellen Sarvida, MD Sheila Shope, RN, FNP Centre Hospitalier Universitaire Sainte-Justine Dana-Farber Cancer Institute Dana-Farber Cancer Institute Vanderbilt University/Ingram Cancer Center Children s Hospital of Philadelphia Children s Healthcare of Atlanta/Emory University Vanderbilt University/Ingram Cancer Center Hospital for Sick Children Royal Children s Hospital Dana-Farber Cancer Institute University of Rochester Medical Center St. Jude Children s Research Hospital Ann & Robert H. Lurie Children s Hospital of Chicago Dana-Farber Cancer Institute Dana-Farber Cancer Institute Ann & Robert H. Lurie Children s Hospital of Chicago St. Jude Children s Research Hospital Seattle Children s Hospital University of Minnesota Wake Forest University Health Sciences Children s Oncology Group St. Jude Children s Research Hospital Lucile Packard Children s Hospital Stanford University Memorial Sloan-Kettering Cancer Center St. Jude Children s Research Hospital St. Jude Children s Research Hospital Brigham & Women s Hospital Riley Hospital for Children University of Tennessee Health Science Center Duke University Medical Center Children s Hospital Boston Wake Forest University Health Sciences Children s Mercy Hospitals and Clinics Johns Hopkins University Loyola University Medical Center St. Jude Children s Research Hospital Pediatric endocrinology Nursing Pediatric endocrinology Pediatric oncology Nursing Pediatric endocrinology Pediatric endocrinology Pediatric endocrinology Radiation oncology Pediatric endocrinology Radiation oncology Pediatric oncology Pediatric oncology Pediatric oncology, Epidemiology Nursing Nursing Pediatric oncology Pediatric urology Pediatric dentistry Pediatric oncology Patient advocacy Surgery Pediatric oncology Pediatric dentistry Pediatric oncology Pediatric radiology Pediatric dentistry Radiation oncology Pediatric dentistry Pediatric GI/hepatology Pediatric dentistry Surgery Pediatric oncology Nursing Pediatric oncology Family medicine COG LTFU Guidelines Page xii Version 4.0 October 2013 Task Force Membership

14 Task Force Membership (cont) Task Force Task Force Members Institution Expertise Hematopoietic cell transplantation Immune Dermatologic Smita Bhatia, MD, MPH Eric Chow, MD, MPH, Chair Katharina Elliott, MD Karen Mandel, MD, FRCPC, FAAP Wendy Pelletier, MSW Joanna Perkins, MD, MS, Chair Linda Rivard, RN, BSN, CPON Tal Schecter-Finkelstein, MD Ami Shah, MD Karla Wilson, RN, MSN, FNP-C Kenneth Wong, MD Lise Yasui City of Hope Seattle Children s Hospital Bronson Methodist Hospital Children s Hospital of Eastern Ontario Alberta Children s Hospital Children s Hospitals and Clinics of Minnesota Advocate Children s Hospital-Oak Lawn Hospital for Sick Children Mattel Children s Hospital UCLA City of Hope Children s Hospital of Los Angeles Children s Oncology Group Pediatric oncology Pediatric oncology Pediatric oncology Pediatric oncology Pediatric oncology, Immunology Social work Nursing, Patient advocate Stem cell transplant Stem cell transplant Nursing Radiation oncology Patient advocacy Task Force Task Force Members Institution Expertise Musculoskeletal LaVette Bowles, FNP Colleen Coulter-O Berry, PT Winston Huh, MD, Chair Joseph Janicki, MD Sue Kaste, DO Missy Layfield Jill Lunsford Lee, RN, MSN, CPNP-AC, CPON Valerae Lewis, MD Anita Mahajan, MD Rajaram Nagarajan, MD, MPH Kirsten Ness, PT, PhD Arnold Paulino, MD Robert Lor Randall, MD Lynn Tanner, MS, PT Karen Wasilewski-Masker, MD, Chair UCLA School of Medicine Children s Healthcare of Atlanta/Emory University M.D. Anderson Cancer Center Ann & Robert H. Lurie Children s Hospital of Chicago St. Jude Children s Research Hospital Children s Oncology Group University of Minnesota M.D. Anderson Cancer Center M.D. Anderson Cancer Center Cincinnati Children s Hospital Medical Center St. Jude Children s Research Hospital Baylor College of Medicine Primary Children s Medical Center Children s Hospitals and Clinics of Minnesota Children s Healthcare of Atlanta/Emory University Family medicine Physical therapy, Prosthetics Pediatric oncology Orthopedic surgery Pediatric radiology Patient advocacy Nursing Orthopedic oncology Radiation oncology Pediatric oncology Physical therapy, Epidemiology Radiation oncology Orthopedic oncology Physical therapy Pediatric oncology COG LTFU Guidelines Page xiii Version 4.0 October 2013 Task Force Membership

15 Task Force Membership (cont) Task Force Task Force Members Institution Expertise Neurocognitive Behavioral Psychosocial Neurologic Christina Baggott, PhD, RN Matt Bitsko, PhD, Silo Leader Veronica Bordes-Edgar, PhD Debra Cohen, MSN, CPNP Kimberley Dilley, MD, MPH Robyn Dillon, MSW Beryl Gantt, MSW Laura Greve, PsyD Jeanne Harvey, RN, MSN, PNP Tracy Howk, MSW Chad Jacobsen, MD Nina-Kadan Lottick, MD, Chair James Klosky, PhD, Chair, Silo Leader Kevin Krull, PhD, Chair, Silo Leader Alicia Kunin-Batson, PhD, Silo Leader Jill Lunsford Lee, RN, MSN, CPNP-AC, CPON Jennifer Levine, MD Belinda Mandrell, PhD, RN, Silo Leader Ann Mertens, PhD Sunita Patel, PhD Sheila Judge Santacroce, PhD, APRN, CPNP Sally Wiard, MSW Joann Ater, MD Jean Belasco, MD Daniel C. Bowers, MD, Chair Jeff Buchsbaum, MD, PhD Linda Butros, MD Paul Graham Fisher, MD, Chair Thomas J. Geller, MD Laura Gilchrist, PT, PhD Kathy Johnston, RN Allison King, MD Peter Manley, MD E. Brannon Morris, MD John Mussman, JD Sonia Partap, MD Suzanne Russo, MD Nicole Ullrich, MD, PhD, Chair Gregory Wheeler, MD UCSF Medical Center-Parnassus Virginia Commonwealth University Phoenix Children s Hospital Virginia Commonwealth University Ann & Robert H. Lurie Children s Hospital of Chicago Virginia Commonwealth University Children s Oncology Group Children s Healthcare of Atlanta/Emory University Washington University School of Medicine Children s Healthcare of Atlanta/Emory University Carolinas Medical Center/Levine Cancer Institute Yale University St. Jude Children s Research Hospital St. Jude Children s Research Hospital University of Minnesota University of Minnesota Columbia University Medical Center St. Jude Children s Research Hospital Children s Healthcare of Atlanta/Emory University City of Hope Yale University University of Texas Health Science Center, San Antonio M.D. Anderson Cancer Center Children s Hospital of Philadelphia University of Texas Southwestern Medical Center Riley Hospital for Children University of New Mexico Lucile Packard Children s Hospital Stanford University Cardinal Glennon Children s Medical Center Children s Hospitals and Clinics of Minnesota Nationwide Children s Hospital Washington University School of Medicine Dana-Farber Cancer Institute Medical College of Georgia Children s Oncology Group Lucile Packard Children s Hospital Stanford University University of South Alabama Dana-Farber Cancer Institute Royal Children s Hospital, University of Melbourne Nursing Pediatric psychology Neuropsychology Nursing Pediatrics Social work Patient advocacy Pediatric psychology Nursing Social work Pediatric oncology Pediatric oncology Pediatric psychology Neuropsychology Neuropsychology Nursing Pediatric oncology Nursing Epidemiology Pediatric psychology Nursing Social work Pediatric oncology Pediatric oncology Pediatric oncology Radiation oncology Pediatric oncology Pediatric neurology Pediatric neurology Physical therapy Nursing Pediatric oncology Neuro-oncology Pediatric neurology Patient advocacy Pediatric neurology Radiation oncology Pediatric neuro-oncology Radiation oncology COG LTFU Guidelines Page xiv Version 4.0 October 2013 Task Force Membership

16 Task Force Membership (cont) Task Force Task Force Members Institution Expertise Sensory Auditory Ocular Subsequent malignant neoplasms Cancer screening Urinary tract Jeff Buchsbaum, MD, PhD Debra L. Friedman, MD Dan Gombos, MD Satkiran S. Grewal, MD, Chair Kristin Knight, MS, CCC-A Maryrose McInerney, PhD, CCC-A Thomas Merchant, DO, PhD Pinki Prasad, MD Kimberly Whelan, MD, MSPH, Chair Catherine Woodman, MD Lisa Bashore, PhD, RN, CPNP Daniel Bowers, MD Smita Bhatia, MD, MPH Louis S. Constine, MD Debra L. Friedman, MD Tara Henderson, MD, Chair Melissa M. Hudson, MD Wendy Landier, PhD, RN, CPNP Marilyn Leitch, MD Martin Mahoney, MD, PhD Ann Mertens, PhD Paul Nathan, MD, Chair Joseph Neglia, MD Kevin Oeffinger, MD Robert Smith, MD Tung Wynn, MD Lise Yasui Mark Yeazel, MD Octavio Zavala Deborah Jones, MD Kala Kamdar, MD Matthew Krasin, MD Anne Mauck, RN, MSN, CPNP Kerry Moss, MD Michael Ritchey, MD Margarett Shnorhavorian, MD, MPH Sheri Spunt, MD, Chair Teresa Sweeney, RN, MSN, CPNP Riley Hospital for Children Vanderbilt University/Ingram Cancer Center M.D. Anderson Cancer Center Baystate Medical Center Doernbecher Childrens Hospital - OHSU Hackensack University Medical Center St. Jude Children s Research Hospital Children s Hospital New Orleans Children s Hospital of Alabama University of Iowa Hospitals and Clinics Cook Children s Medical Center University of Texas Southwestern Medical Center City of Hope University of Rochester Medical Center Vanderbilt University/Ingram Cancer Center University of Chicago St. Jude Children s Research Hospital City of Hope University of Texas Southwestern Medical Center Roswell Park Cancer Institute Children s Healthcare of Atlanta/Emory University The Hospital for Sick Children University of Minnesota Memorial Sloan-Kettering Cancer Center American Cancer Society University of Florida Children s Oncology Group University of Minnesota Children s Oncology Group Vanderbilt University/Ingram Cancer Center Baylor College of Medicine St. Jude Children s Research Hospital Virginia Commonwealth University Connecticut Children s Medical Center Phoenix Children s Hospital Seattle Children s Hospital Lucile Packard Children s Hospital Stanford University St. Jude Children s Research Hospital Radiation oncology Pediatric oncology Ophthalmology Pediatric oncology Audiology Audiology Radiation oncology Pediatric oncology Pediatric oncology Primary care, Patient advocacy Nursing Pediatric oncology Pediatric oncology Radiation oncology Pediatric oncology Pediatric oncology Pediatric oncology Nursing Surgery Family medicine Epidemiology Pediatric oncology Pediatric oncology Family medicine Medical oncology Pediatric oncology Patient advocacy Family medicine Patient advocacy Pediatric nephrology Pediatric oncology Radiation oncology Nursing Pediatric oncology Pediatric urology Pediatric urology Pediatric oncology Nursing COG LTFU Guidelines Page xv Version 4.0 October 2013 Task Force Membership

17 Long-Term Follow-Up Guidelines Health Link Authors The following individuals participated in writing the patient education materials () for the Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers: Thomas R. Baker, CP CFI Prosthetics and Orthotics Memphis, TN Julie Blatt, MD Division of Pediatric Hematology-Oncology University of North Carolina Chapel Hill, NC Sharon M. Castellino, MD Department of Pediatrics, Hematology/Oncology Wake Forest University Health Sciences Winston-Salem, NC Eric J. Chow, MD, MPH Hematology/Oncology Seattle Children s Hospital Seattle, WA Kimberley Dilley, MD, MPH Hematology/Oncology/Transplant Ann & Robert H. Lurie Children s Hospital Chicago, IL Debra Eshelman Kent, RN, MSN, CPNP Cincinnati Children s Hospital Medical Center Cincinnati, OH Fernando A. Ferrer, MD Department of Surgery Connecticut Children s Medical Center Hartford, CT Sarah Friebert, MD Division of Hematology/Oncology Childrens Hospital Medical Center of Akron Akron, OH Debra L. Friedman, MD, MS Pediatric Hematology-Oncology Vanderbilt University/Ingram Cancer Center Nashville, TN Sharon Frierdich, RN, MS, CPNP Pediatric Hematology/Oncology University of Wisconsin Children s Hospital Madison, WI Allison Hester, RN, MSN, CPNP Arkansas Children s Hospital Little Rock, AR Melissa M. Hudson, MD After Completion of Therapy Clinic St. Jude Children s Research Hospital Memphis, TN Asako Komiya, RN, MSN, PNP Department of Epidemiology and Outcomes Research City of Hope Comprehensive Cancer Center Duarte, CA Deborah Lafond, MS, RNCS, PNP, CPON Hematology/Oncology Children s National Medical Center Washington, DC Wendy Landier, PhD, RN, CPNP, CPON Department of Pediatric Hematology/Oncology City of Hope Comprehensive Cancer Center Duarte, CA Marcia Leonard, RN, CPNP Pediatric Hematology/Oncology and Long-Term Follow-Up Clinic C.S. Mott Children s Hospital Ann Arbor, MI Tori Marchese, PhD, PT Penn State Hershey Medical Center Hershey, PA Anne Mauck, RN, MSN, CPNP Pediatric Hematology/Oncology Virginia Commonwealth University Health System Richmond, VA Charlene Maxen, RN, CNP, CPON Division of Hematology/Oncology Childrens Hospital Medical Center of Akron Akron, OH Lillian R. Meacham, MD Division of Pediatric Endocrinology Emory University/Children s Healthcare of Atlanta Atlanta, GA Katherine Myint-Hpu, MSN, MPH, PNP Leukemia/Lymphoma Clinic Georgetown University Hospital Washington, DC Rajaram Nagarajan, MD, MPH University of Minnesota Cancer Center Pediatric Hematology/Oncology/BMT Minneapolis, MN Kevin Oeffinger MD Division of Pediatrics Memorial Sloan-Kettering Cancer Center New York, NY Arnold Paulino, MD Division of Radiation Oncology Methodist Hospital Houston, TX Sunita Patel, PhD Department of Pediatric Hematology/Oncology City of Hope Comprehensive Cancer Center Duarte, CA Michael Ritchey, MD Pediatric Urology Associates Phoenix, AZ Kathy Ruble, RN, CPNP, AOCN Long Term Follow-Up Program Johns Hopkins University Baltimore, MD Sheila Judge Santacroce, PhD, APRN, CPNP School of Nursing Yale University New Haven, CT Margery Schaffer, RN, MSN, CPNP Department of Hematology/Oncology Children s Medical Center Dayton, OH Susan Shannon, RN, MSN, CPNP, CPON STAR Late Program Miller Children s Hospital Long Beach, CA Patricia Shearer, MD, MS University of Maryland Medical Center Baltimore, MD Sheila Shope, RN, FNP After Completion of Therapy Clinic St. Jude Children s Hospital Memphis, TN COG LTFU Guidelines Page xvi Version 4.0 October 2013 Health Link Authors

18 Health Link Authors (cont) Sheri L. Spunt, MD Hematology/Oncology Lucile Packard Children s Hospital Stanford University Palo Alto, CA Teresa Sweeney, RN, MSN, CPNP After Completion of Therapy Clinic St. Jude Children s Research Hospital Memphis, TN Sally Wiard, MSW, LCSW University of Texas Health Science Center San Antonio, TX Health Link Graphic Artist Devika Bhatia Westridge School Pasadena, CA COG LTFU Guidelines Page xvii Version 4.0 October 2013 Health Link Authors

19 Long-Term Follow-Up Guidelines Health Link Reviewers The following individuals participated in reviewing the patient education materials () for the Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers: Daniel Armstrong, PhD Lisa Bashore, PhD, RN, CPNP, CPON Smita Bhatia, MD, MPH Julie Blatt, MD Sarah Bottomley, MN, RN, CPNP, CPON Emmett J. Broxson, Jr., MD Billie Buchert, RN, BSN Jacqueline Casillas, MD Joe Don Cavender, MSN, RN, CPNP Vimal Chadha, MD Louis S. Constine, MD Joan Darling, PhD Nancy L. Dunn, MD J. Dominic Femino, MD Debra L. Friedman, MD Daniel Green, MD Elizabeth Hall, CPNP Scott Hawkins, LMSW Melissa M. Hudson, MD Winnie Kittiko, RN, MS Peggy Kulm, RN, MA Wendy Landier, PhD, RN, CPNP, CPON Missy Layfield Thanh Le, MD Marcia Leonard, RN, CPNP Neyssa Marina, MD Gita Massey, MD Lillian R. Meacham, MD Jill Meredith, RN, BSN, OCN Revonda Mosher, RN, MSN, CPNP, CPON John R. Mussman Man Wai Ng, DDS Kevin Oeffinger, MD Josee Pacifico, RN, BSc (N) Rebecca D. Pentz, PhD Priscilla Rieves, MS, RN, CPNP Michael L. Ritchey, MD Leslie L. Robison, PhD Kathleen Ruccione, RN, MPH, FAAN, CPON E. Clifton Russell, MD Susan Shaw, RN, MS, PNP Charles A. Sklar, MD Johanne Soucy, RN, B.SC.N Karen Stormer, RN, CNS, CPON Joetta Deswarte-Wallace, RN, MSN Edward Walz, MD Fran Wiley, RN, MN Roberta G. Williams, MD Catherine L. Woodman, MD Lise Yasui Octavio Zavala COG LTFU Guidelines Page xviii Version 4.0 October 2013 Health Link Reviewers

20 Long-Term Follow-Up Guidelines Guideline Development Task Force Initial Versions The Children s Oncology Group Nursing Discipline and Late Committee developed the initial versions (1.0, 1.1, and 1.2) of the Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers collaboratively through the efforts of the following individuals: Melissa M. Hudson, MD Vice-Chair COG Late Committee Member, Department of Oncology Director, After Completion of Therapy Clinic St. Jude Children s Research Hospital Memphis, Tennessee Wendy Landier, PhD, RN, MSN, CPNP, CPON Chair COG Nursing Clinical Practice Subcommittee Clinical Director Survivorship Clinic City of Hope Comprehensive Cancer Center Duarte, California Debra Eshelman Kent, RN, MSN, CPNP Late tion Leader COG Nursing Clinical Practice Subcommittee Pediatric Nurse Practitioner Cincinnati Children s Hospital Medical Center Cincinnati, OH Joan Darling, PhD COG Patient Advocate Committee Representative Lincoln, Nebraska Allison Hester, RN, MSN, CPNP Pediatric Nurse Practitioner Arkansas Children s Hospital Memphis, Tennessee Teresa Sweeney, RN, MSN, CPNP Pediatric Nurse Practitioner After Completion of Therapy Clinic St. Jude Children s Research Hospital Memphis, Tennessee Special Acknowledgment With sincere appreciation to Louis S. Sandy Constine, MD Vice Chair, Department of Radiation Oncology James P. Wilmont Cancer Center University of Rochester Medical Center for his in-depth expert review and extensive contributions to all radiation-related sections in all versions of the COG LTFU Guidelines COG LTFU Guidelines Page xix Version 4.0 October 2013 Task Force Initial Versions

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