Long-Term Follow-Up Guidelines

1 Long-Term Follow-Up Guidelinesfor Survivors of Childhood, Adolescent, and Young Adult CancersVersion - October 2018 Website: 2018 Children s Oncology GroupAll rights reserved worldwideGenerously supported byWith special appreciation toJocelyn M. York, BA,Institute for Cancer Outcomes and SurvivorshipUniversity of Alabama at BirminghamBirmingham, AL for editing and typesettingLong-Term Follow-Up Guidelinesfor Survivors of Childhood, Adolescent, and Young Adult CancersVersion October 2018 Children s Oncology GroupAll rights reserved worldwideCOG LTFU Guidelines Page v Version October 2018 Section #PageSexTherapeutic AgentPotential Late Effect1418 FemaleAlkylating AgentsReduced ovarian follicular pool1520 Alkylating AgentsAcute myeloid leukemia; Myelodysplasia1621 Alkylating AgentsPulmonary fi brosis1722 Alkylating AgentsCataracts1823 Alkylating AgentsUrinary tract toxicity1924 Alkylating AgentsBladder malignancy2025 Alkylating AgentsRenal toxicity2126 Heavy MetalsOtotoxicity2228 Heavy MetalsPeripheral sensory neuropathy2329 Heavy MetalsRenal toxicity2430 AntimetabolitesNeurocognitive defi cits2531 AntimetabolitesNo known late effects (cytarabine [low dose IV, IO, IT, SQ])2632 AntimetabolitesHepatic dysfunction.

2 Sinusoidal obstruction syndrome (SOS)2733 AntimetabolitesReduced bone mineral density (BMD)2835 AntimetabolitesNo known renal late effects (methotrexate)2936 AntimetabolitesHepatic dysfunction3037 AntimetabolitesNeurocognitive defi cits3138 AntimetabolitesClinical leukoencephalopathy3239 Anthracycline AntibioticsAcute myeloid leukemia3340 Anthracycline AntibioticsCardiac toxicity3442 Anti-Tumor AntibioticsPulmonary toxicity3544 Anti-Tumor AntibioticsNo known late effects (dactinomycin)3645 CorticosteroidsReduced bone mineral density (BMD)3747 CorticosteroidsOsteonecrosis (avascular necrosis)3848 CorticosteroidsCataracts3949 EnzymesNo known late effects (asparaginase)4050 Plant AlkaloidsPeripheral sensory or motor neuropathy Contents Section #PageSexTherapeutic AgentPotential Late Effect Any Cancer Experience11 Any Cancer ExperienceAdverse psychosocial/quality of life effects23 Any Cancer ExperienceMental health disorders34 Any Cancer ExperienceRisky behaviors45 Any Cancer ExperiencePsychosocial disability due to pain56 Any Cancer ExperienceFatigue.

3 Sleep problems67 Any Cancer ExperienceLimitations in healthcare and insurance accessBlood/Serum Products78 Diagnosed prior to 1972 Chronic hepatitis B89 Diagnosed prior to 1993 Chronic hepatitis C910 Diagnosed between 1977 and 1985 HIV infectionChemotherapy1011 Any ChemotherapyDental abnormalities1112 MaleAlkylating AgentsTesticular hormonal dysfunction1214 MaleAlkylating AgentsImpaired spermatogenesis1316 FemaleAlkylating AgentsOvarian hormone defi cienciesIntroductory MaterialsPageAbstractxDisclaimer and Notice of Proprietary RightsxiContributors - Panel of ExpertsxiiContributors - Task Force Membership 2013-2018xiiiContributors - Guideline Development Task Force - Initial VersionsxviiiContributors - Health Link AuthorsxviiiPrefacexixInstructions for UsexxiiiNew to Version LTFU Guidelines Page vi Version October 2018 Section #PageSexTherapeutic AgentPotential Late Effect4151 Plant AlkaloidsVasospastic attacks (Raynaud's phenomenon)4252 EpipodophyllotoxinsAcute myeloid leukemiaRadiation4354 All FieldsSecondary benign or malignant neoplasm occurring in or near radiation fi eld4456 All FieldsDermatologic toxicity4557 Brain/CraniumBrain tumor (benign or malignant)4658 Brain/CraniumNeurocognitive defi cits4759 Brain/CraniumClinical leukoencephalopathy4860 Brain/CraniumCerebrovascular complications4961 Brain/CraniumCraniofacial abnormalities5062 Brain/CraniumChronic sinusitis5163 Neuroendocrine AxisOverweight.

4 Obesity5265 Neuroendocrine AxisGrowth hormone defi ciency5367 MaleNeuroendocrine AxisPrecocious puberty5468 FemaleNeuroendocrine AxisPrecocious puberty5569 Neuroendocrine AxisHyperprolactinemia5670 Neuroendocrine AxisCentral hypothyroidism5771 MaleNeuroendocrine AxisGonadotropin defi ciency5873 FemaleNeuroendocrine AxisGonadotropin defi ciency5975 Neuroendocrine AxisCentral adrenal insuffi ciency6076 EyeCataracts6177 EyeOcular toxicity6278 EarOtotoxicity6380 Oral CavityXerostomia; Salivary gland dysfunction6481 Oral CavityDental abnormalities; Temporomandibular joint dysfunction6582 Oral CavityOsteoradionecrosis of the jaw6683 Neck/ThyroidThyroid nodules6784 Neck/ThyroidThyroid cancer Contents (cont) Section #PageSexTherapeutic AgentPotential Late Effect6885 Neck/ThyroidHypothyroidism6987 Neck/ThyroidHyperthyroidism7088 Neck/ThyroidCarotid artery disease7189 Neck/ThyroidSubclavian artery disease7290 FemaleBreastBreast cancer7391 FemaleBreastBreast tissue hypoplasia7492 LungsPulmonary toxicity7593 LungsLung cancer7694 HeartCardiac toxicity7796 SpleenFunctional asplenia7898GI/Hepatic SystemEsophageal stricture7999GI/Hepatic SystemImpaired glucose metabolism/diabetes mellitus80100GI/Hepatic SystemDyslipidemia81101GI/Hepatic SystemHepatic toxicity82102GI/Hepatic SystemCholelithiasis83103GI/Hepatic SystemBowel obstruction84104GI/Hepatic SystemChronic enterocolitis; Fistula.

5 Strictures85105GI/Hepatic SystemColorectal cancer86107 Urinary TractRenal toxicity87108 Urinary TractUrinary tract toxicity88109 Urinary TractBladder malignancy89110 MaleMale Reproductive SystemTesticular hormonal dysfunction90111 MaleMale Reproductive SystemImpaired spermatogenesis91113 FemaleFemale Reproductive SystemOvarian hormone defi ciencies92114 FemaleFemale Reproductive SystemReduced ovarian follicular pool93116 FemaleFemale Reproductive SystemUterine vascular insuffi ciency94117 FemaleFemale Reproductive SystemVaginal fi brosis/stenosisCOG LTFU Guidelines Page vii Version October 2018 Section #PageSexTherapeutic AgentPotential Late Effect95118 Musculoskeletal SystemMusculoskeletal growth problems96119 Musculoskeletal SystemScoliosis/Kyphosis97120 Musculoskeletal SystemRadiation-induced fractureHematopoietic Cell Transplant (HCT)98122 Auto HCTA cute myeloid leukemia; Myelodysplasia99123 MaleHCTS olid tumors100124 FemaleHCTS olid tumors101126 HCTH epatic toxicity102128 HCTO steonecrosis (avascular necrosis)103129 HCTR educed bone mineral density (BMD)104131 HCTR enal toxicity105132 With Chronic GVHDD ermatologic toxicity106133 With Chronic GVHDX erophthalmia (keratoconjunctivitis sicca)107134 With Chronic GVHDOral toxicity108136 With Chronic GVHDP ulmonary toxicity109137 With Chronic GVHDI mmunologic complications110138 With CURRENTLY ACTIVE Chronic GVHDF unctional asplenia111140 With Chronic GVHDE sophageal stricture112141 FemaleWith Chronic GVHDV ulvar scarring; Vaginal fi brosis/stenosis113142 With Chronic GVHDJ oint contracturesSurgery114143 AmputationAmputation-related complications115145 Central Venous CatheterThrombosis; Vascular insuffi ciency; Infection of retained cuff or line tract.

6 Post-thrombotic syndrome116146 CystectomyCystectomy-related complications117147 EnucleationImpaired cosmesis; Poor prosthetic fi t; Orbital hypoplasia118148 FemaleHysterectomyPelvic fl oor dysfunction; Urinary incontinence; Sexual dysfunction Contents (cont) Section #PageSexTherapeutic AgentPotential Late Effect119149 LaparotomyAdhesions; Bowel obstruction120150 Limb Sparing ProcedureComplications related to limb sparing procedure121151 MaleNephrectomyHydrocele; Renal toxicity122153 FemaleNephrectomyRenal toxicity123155 Neurosurgery-BrainNeurocognitive defi cits124156 Neurosurgery-BrainMotor and/or sensory defi cits125157 Neurosurgery-BrainSeizures126158 Neurosurgery-BrainHydrocephalus; Shunt malfunction127159 Neurosurgery-BrainOverweight; Obesity128160 Neurosurgery-BrainDiabetes insipidus129161 Neurosurgery-Spinal CordNeurogenic bladder; Urinary incontinence130162 Neurosurgery-Spinal CordNeurogenic bowel; Fecal incontinence131163 MaleNeurosurgery-Spinal CordPsychosexual dysfunction132164 FemaleNeurosurgery-Spinal CordPsychosexual dysfunction133165 Neurosurgery-Spinal CordScoliosis/Kyphosis134166 FemaleOophoropexyOophoropexy-related complications135167 FemaleOophorectomy (Unilateral)Ovarian hormone defi ciencies136168 FemaleOophorectomy (Unilateral)Reduced ovarian follicular pool137169 FemaleOophorectomy (Bilateral)Ovarian hormone defi ciencies; Loss of ovarian follicular pool138170 MaleOrchiectomy (Unilateral, Partial)Testicular hormonal dysfunction139172 MaleOrchiectomy (Unilateral, Partial)Impaired spermatogenesis140174 MaleOrchiectomy (Bilateral)Testosterone defi ciency; Azoospermia141175 Pelvic Surgery; CystectomyUrinary incontinence; Urinary tract obstruction142176 Pelvic Surgery.

7 CystectomyFecal incontinence143177 MalePelvic Surgery; CystectomyPsychosexual dysfunctionCOG LTFU Guidelines Page viii Version October 2018 Contents (cont) Section #PageSexTherapeutic AgentPotential Late Effect144178 MalePelvic Surgery; CystectomySexual dysfunction (anatomic); Infertility145179 FemalePelvic Surgery; CystectomySexual dysfunction146180 SplenectomyAsplenia147182 Thoracic SurgeryPulmonary dysfunction148183 Thoracic SurgeryScoliosis/Kyphosis149184 ThyroidectomyHypothyroidismOther Therapeutic Models 150185 Systemic Radiation(I-131)Lacrimal duct atrophy151186 Systemic Radiation (I-131)Hypothyroidism152187 Systemic Radiation (MIBG)Hypothyroidism153188 Systemic Radiation (MIBG)Thyroid nodules154189 Systemic Radiation (MIBG)Thyroid cancer155190 BioimmunotherapyInsuffi cient information currently available regarding late effects of biological agentsCancer Screening Guidelines 156191 FemaleBreast Cancer157192 FemaleCervical Cancer158194 Colorectal Cancer159196 FemaleEndometrial Cancer160197 Lung Cancer161198 Oral Cancer162199 MaleProstate Cancer163200 Skin Cancer164201 MaleTesticular CancerGeneral Health Screening165202 General Health ScreeningAppendix I.

8 Materials for Clinical Application of LTFU GuidelinesPage Reference Materials3 Abbreviations5 Chemotherapy Agents7 Radiation Fields Defi ned8 Radiation Dose Calculations11 Guideline Radiation Sections by Field12 Guideline Radiation Sections by Potential Impact13 total body irradiation (TBI) Related Potential Late Effects16 Appeal Letter Following Denial of Insurance Claims for Survivorship Care17 Instructions19 Template for Letter from Patient, Parent, or Guardian20 Template for Letter from Long-Term Follow-Up Clinician21 Summary of Cancer Treatment23 Instructions25 Template for Summary of Cancer Treatment (Abbreviated)27 Template for Summary of Cancer Treatment (Comprehensive)28 Key for Completing Summary of Cancer Treatment (Comprehensive)30 Patient-Specifi c Guideline Identifi cation Tool37 Instructions39 Patient-Specifi c Guideline Identifi cation Tool (Version )40 Section Number Comparison - COG LTFU Guidelines Version vs II: Health Links (Patient Education Materials)Health Links Index by TitleHealth LinksVersion 2018 Long-Term Follow-Up Guidelinesfor Survivors of Childhood, Adolescent, and Young Adult CancersIntroductory MaterialsCOG LTFU Guidelines Page x Version October 2018 AbstractRelease date: October 2018 Status: Updated from Version incorporating modifi cations based on recommendations from the Children s Oncology Group s Long- Term Follow-Up Guideline Core Committee and its associated multidisciplinary Task : These risk-based, exposure-related clinical practice Guidelines provide recommendations for screening and management of late effects in survivors of pediatric malignancies.

9 ( Pediatric malignancies are defi ned 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 Health Links 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 survivors based on therapeutic exposures. The information provided in these Guidelines is important for primary healthcare providers in the fi elds of pediatrics, oncology, internal medicine, family practice, and gynecology, as well as subspecialists in many fi elds. 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 : Version of the Children s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, and related Health Links, can be downloaded in their entirety from Citations for COG Long-Term Follow-Up GuidelinesGuidelinesChildren s Oncology Group.

10 Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers, Version Monrovia, CA: Children s Oncology Group; October 2018; Available on-line: MethodologyLandier 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, Oeffi nger KC, Robison LL, Ruccione KS, Sklar CA, Hudson MM. Development of risk-based Guidelines for pediatric cancer survivors: the C