Long-Term Follow-Up Guidelines

1 Long-Term Follow-Up Guidelinesfor Survivors of Childhood, Adolescent,and Young Adult CancersCopyright 2008 Children s Oncology GroupAll rights reserved Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Version October 2008 Copyright 2008 Children s Oncology Group All rights reserved worldwide CO G Long-Term Fo llow-UpGuidelinesCo nte nt Out lineContentOutlineAppendixI: Ma ter ials for ClinicalApplication of LTFUG uidelines Pa tient -Specific GuidelineIdent ifica tion Tool Radiation Ref ere nce Guide Hea lth Link Indexby GuidelineSectionNumber Summaryof Cancer Trea tment- Summary of Canc er Tre at ment- Introduction- Template for Summary of CancerTreat ment(Abbreviated)- Template for Summary of CancerTreat ment(Comprehensive)- Key fo r Completing Summary of CancerTreat ment(Comprehensive Version) Refe renc e Ma teria ls- Abbreviat ions- Chemother apy Age ntsAppendixII.

2 Hea lt h Li nks (P atientEducation Materials) long -Te rm Fol low -Up Gui deli nes Ab str act Di scl ai me r Con tr ibuto rs- Pan el of Expe rt s- Ta sk Fo rc e Memb er shi p- Hea lth Li nk Aut ho rs an d Re vie wer s- Guid el ine Deve lopme nt Task For ce and Rev ie we rs Intr od uc tory Mat er ia l- Intr od uc ti on- Exp la nat io n of Sc orin g- Inst ruct io ns for Use- Ne w to Ver sio n Lon g-Ter m Fol low- Up Gu ide line sSuggested Ci tat ions for COG long -TermFoll ow- Up Gui delinesGui deli nesCh ildre n s Onc g- term follo w-up gui del in es for sur vivorsof childhood,ad olesc ent an d youngadult cancers, Arcadia,CA: Chi ldren'sOncol ogy Group;Oct obe r 2008; Availableon-l in e: www .sur vivorship deli nes Meth odol og y:Land ie r W, Bhatia S, EshelmanDA, ForteKJ, SweeneyT, Hester AL, DarlingJ, Ar mstrong FD, Blatt J, ConstineLS, FreemanCR, FriedmanDL, GreenDM, MarinaN, MeadowsAT,Ne glia JP, Oeff ingerKC, Robi son LL, Rucc ion e KS, SklarCA, HudsonMM.

3 Developmentof ri sk- basedguidelinesfor pediatriccancersurvivors:the Children'sOncologyGrouplon g-ter m follow -upguidelinesfrom the Chi ld ren 's OncologyGrou p Late EffectsCommitteeand Cl in Oncol2004;22(24) alt h Li nks Bac kgro und and Appl ica tion:Es he lma n D, LandierW, Sweeney T, HesterAL, ForteK, DarlingJ & Hu dson MM. Fac ilitating care for childhoodcancersurvivors:integratingChi ldren'sOncologyGrouplong-termfol low -u p guidelinesand he alth li nks in cl ini cal prac Pedi atr On col Nurs2004;21(5) Version Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors ofChildhood, Adolescent, and Young Adult CancersRelease date:October 2008 Status:Updated from Version incorporating modifications based on recommendations from the Children s Oncology Group s Long-Term Follow-Up Guideline Core Committee and its eighteen associated multidisciplinary Task :These risk-based, exposure-related clinical practice Guidelines provide recommendations for screening and management of lateeffects in survivors of pediatric malignancies.

4 ("Pediatric malignancies" are defined as those malignancies commonly associatedwith the pediatric population that may arise during childhood, adolescence or young adulthood.) A complementary set ofpatient education materials, known as "Health Links" accompany the Guidelines in order to enhance patient Follow-Up visits andbroaden the application of these Guidelines . Additional accompanying materials include detailed instructions, templates forcancer treatment summary forms, a radiation reference guide, and a tool to assist in identifying guideline applicability forindividual patients based on therapeutic exposures. The information provided in these Guidelines is important for primaryhealthcare providers in the fields of pediatrics, oncology, internal medicine, family practice, and gynecology, as well assubspecialists in many fields.

5 Implementation of these Guidelines is intended to increase awareness of potential late effects andto standardize and enhance Follow-Up care provided to survivors of pediatric malignancies throughout their :Version of theChildren s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and YoungAdult Cancers, and related Health Links, can be downloaded in their entirety from AND NOTICE OF PROPRIETARY RIGHTSI ntroduction to Late Effects Guidelines and Health Links:The " Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "HealthLinks" were developed by the Children s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children s OncologyGroup s Long-Term Follow-Up Guidelines Core Committee and its associated Task Informational Purposes Only.

6 The information and contents of each document or series of documents made available by the Children s Oncology Group relating to late effects of cancertreatment 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 printor electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational Content". All Informational Content is forinformational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or healthcare 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 haveregarding a medical condition and do not rely on the Informational Content.

7 The Children s Oncology Group is a research organization and does not provide individualized medical careor physicians and other healthcare providers:The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimatecriteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude otherreasonable 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 cancersurvivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare 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 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 ofpublication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational 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.

8 No liability isassumed 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 thefollowing terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and membersof 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 holdharmless 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 demandsrelated to or arising out of use, review or access of the Informational Rights:The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide.

9 The Children's OncologyGroup retains excusive 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 sOncology 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 signingconsents and legal documents and limiting dissemination or reproduction of Informational Follow-Up Guidelinesfor Survivors of Childhood, Adolescent,and Young Adult CancersVersion October 2008 Copyright 2008 Children s Oncology GroupAll rights reserved worldwideMelissa M. Hudson, MDCo-Chair COG LTFU Guidelines Core CommitteeMember, Department of Hematology-OncologyDirector, Cancer Survivorship DivisionCo-Leader, Cancer Prevention & Control ProgramSt.

10 Jude Children s Research HospitalMemphis, TNWendy Landier, RN, MSN, CPNP, CPON Co-Chair COG LTFU Guidelines Core CommitteeClinical Director, Center for Cancer SurvivorshipCity of Hope National Medical CenterDuarte, CALouis S. Constine, MD, COG LTFU Guidelines Core CommitteeProfessor of Radiation Oncology and PediatricsVice Chair, Department of Radiation OncologyJames P. Wilmot Cancer CenterUniversity of Rochester Medical CenterRochester, NYSmita Bhatia, MD, MPHCo-Chair COG LTFU Guidelines Core CommitteeProfessor and Chair, Department of Population SciencesCity of Hope National Medical CenterAssociate Director, Population ResearchCity of Hope Comprehensive Cancer CenterDuarte, CAF. Daniel Armstrong, PhDProfessor and Associate Chair, Department of PediatricsDirector, Mailman Center for Child DevelopmentUniversity of Miami School of MedicineMiami, FLJoan Darling, PhDCOG Patient Advocacy Committee RepresentativeLincoln, NEPaul Graham Fisher, MD, MHSA ssociate Professor, Neurology and PediatricsThe Beirne Family Director of Neuro-Oncology at Packard HospitalStanford University Medical CenterStanford, CADebra L.