Pediatric Psycho-oncology Pediatric Psycho-oncology Psychosocial Aspects and Clinical Interventions Second Edition Editors Shulamith Kreitler, PhD Professor,SchoolofPsychologicalSciences,Tel-AvivUniversity;FacultyofSocialWelfareandHealthSciences, UniversityofHaifa;Head,PsychooncologyResearchCenter,ShebaMedicalCenter,TelHashomer,Israel Myriam Weyl Ben-Arush, MD Head,DepartmentofPediatricHematologyOncologyandDeputyDirector, MeyerChildren’sHospital,RambamHealthCareCampus,TechnionIsrael-InstituteofTechnology, theBruceRappaportFacultyofMedicine,Haifa,Israel (cid:1) Andres Martin, MPH RivaAriellaRitvoProfessorofPediatricOncologyPsychosocialServices,ChildStudyCenter, YaleUniversitySchoolofMedicine;andSmilowCancerHospitalatYale-NewHaven, NewHaven,CT,USA Thiseditionfirstpublished2012#2012byJohnWiley&Sons,Ltd Wiley-BlackwellisanimprintofJohnWiley&Sons,formedbythemergerofWiley’sglobalScientific,TechnicalandMedical businesswithBlackwellPublishing. 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RC281.C4P4452012 618.92'994–dc23 2012010170 AcataloguerecordforthisbookisavailablefromtheBritishLibrary. Wileyalsopublishesitsbooksinavarietyofelectronicformats.Somecontentthatappearsinprintmaynotbeavailablein electronicbooks. CoverImage:#SeanGladwell—fotolia.com Setin9/11ptTimesNewRomanbyThomsonDigital,Noida,India. FirstImpression2012 The book is dedicated to all the children and families we had the honor to take care of in the past fi and who will bene t from it in the future. Contents ListofContributors ix Chapter8 CommunicatingwithChildren: Foreword xiii theirUnderstanding,Information JimmieHolland Needs,andProcesses 71 M.LouiseWebster,JaneE.Skeen Introduction:EmbeddingPsychosocialCarein Medicine:PediatricPsycho-oncology Chapter9 PsychosocialInterventions: asaModel xv aCognitiveBehavioralApproach 92 GaryM.Kupfer BobF.Last,MarthaA.Grootenhuis Preface xvii Chapter10 EducationinPediatricOncology: LearningandReintegration PartA ActiveTreatment 1 intoSchool 104 CiporahS.Tadmor, Chapter1 CancerinChildren:anOverview 3 RivkaRosenkranz, ShaiIzraeli,GideonRechavi MyriamWeylBen-Arush Chapter2 ComprehensiveandFamily- Chapter11 PsychopharmacologyinPediatric CenteredPsychosocialCarein Oncology 118 PediatricOncology:Integrationof ElizabethG.Pinsky, ClinicalPracticeandResearch 7 AnnahN.Abrams LoriWiener,MarylandPao Chapter12 ComplementaryandAlternative Chapter3 QualityofLifeinChildren MedicineUseinChildren withCancer 18 withCancer 135 ShulamithKreitler, SubhadraEvans,LauraCousins, MichalM.Kreitler LonnieZeltzer Chapter4 PaininPediatricOncology 32 Chapter13 Fantasy,ArtTherapies,andOther RichardD.W.Hain ExpressiveandCreative Chapter5 PsychiatricImpactofChildhood PsychosocialInterventions 143 Cancer 43 ShulamithKreitler, MargaretL.Stuber DanielOppenheim, ElsaSegev-Shoham Chapter6 PsychosocialEffectsof HematopoieticCellTransplantation Chapter14 PalliativeCareforChildrenwith inChildren 52 AdvancedCancer 160 RonitElhasid,MichalM.Kreitler, StefanJ.Friedrichsdorf, ShulamithKreitler, LonnieZeltzer MyriamWeylBen-Arush PartB Survivorship 175 Chapter7 PsychosocialAspectsof RadiotherapyinPediatricCancer Chapter15 NeuropsychologicalSequelaeof Patients 62 ChildhoodCancer 177 ShulamithKreitler, MatthewC.Hocking, ElenaKrivoy,AmosToren MelissaA.Alderfer viii CONTENTS Chapter16 SurvivorshipinChildhoodCancer 187 Chapter21 WhenaParenthasCancer: ElenaKrivoy,MerielE.M. SupportingHealthyChild Jenney,AmitaMahajan, DevelopmentDuringChallenging MoniquePeretzNahum Times 246 SusanD.Swick,Andr(cid:1)esS.Martin, PartC DeathandBereavement 197 PaulaRauch Chapter17 CareofaChildDyingofCancer 199 Chapter22 CollaborationsinPsychosocial SergeyPostovsky, CareinPediatricOncology: MyriamWeylBen-Arush theMiddleEastasaCaseExample 260 AzizaT.Shad,MariaE.McGee, Chapter18 PsychologicalInterventionwith MatthewG.Biel, theDyingChild 209 MichaelSilbermann ShulamithKreitler,ElenaKrivoy Chapter19 ProvidingSupportforFamilies PartE Appendix 269 ExperiencingtheDeathofaChild 223 AppendixAAssessmentToolsinPediatric DavidJ.Schonfeld Psycho-oncology 271 DafnaMunitz-Shenkar,MichalM. PartD AdditionalConsiderations 231 Kreitler,ShulamithKreitler Chapter20 EthicalConsiderationsinPediatric AppendixBAdditionalResources 298 Oncology:aCase-Based PsychosocialOverview 233 RyanW.Blum,Andr(cid:1)esS.Martin Index 301 List of Contributors AnnahN.Abrams,MDChildPsychiatrist,Department Stefan J. Friedrichsdorf, MD Medical Director, of Pediatric Hematology Oncology, Massachusetts Department of Pain Medicine, Palliative Care & General Hospital; Chief, Child Psychiatry Integrative Medicine. Children’s Hospitals and Consultation Liaison Service, Massachusetts General ClinicsofMinnesota.Minneapolis,MN,USA Hospital; Assistant Professor of Psychiatry, Harvard MedicalSchool,Boston,MA,USA Martha A. Grootenhuis, PhD, Professor of Pediatric Psychology, Emma Kinderziekenhuis, Academic Melissa A. Alderfer, PhD Assistant Professor of Medical Centre, University of Amsterdam, Pediatrics,TheChildren’sHospital of Philadelphia Netherlands and Perelman School of Medicine, The University ofPennsylvania,Philadelphia,PA,USA Richard D. W. Hain, MBBS MSc MD MRCP(UK) FRCPCH Dip Pall Med FHEA PGCE Myriam Weyl Ben-Arush, MD Head, Department of Consultant and Lead Clinician, Wales Paediatric Pediatric Hematology Oncology,Meyer Children’s Palliative Medicine Managed Clinical Network, Hospital; Deputy Director, Meyer Children’s Children’s Hospital for Wales, Cardiff, UK, Hospital,RambamHealthCareCampus,Technion Visiting Professor, University of Glamorgan, Israel-InstituteofTechnology,theBruceRappaport Wales, Honorary Senior Lecturer, Bangor FacultyofMedicine,Haifa,Israel University, Bangor, UK MatthewG.Biel,MD,MScChief,SectionofChildand Matthew C. Hocking, PhD Psychology Fellow, Adolescent Psychiatry; Assistant Professor, Division of Oncology, The Children’s Hospital of DepartmentsofPsychiatryandPediatrics,Georgetown Philadelphia,Philadelphia,PA,USA UniversityHospital,Washington,DC,USA Jimmie Holland, MD Wayne E. Chapman Chair in Ryan W. Blum, AB Yale School of Medicine, Yale Psychiatric Oncology, Memorial Sloan-Kettering ChildStudyCenter,YalePediatricEthicsProgram, CancerCenter,NewYork,NY,USA CT,USA Shai Izraeli, MD Head, Functional Genomics and LauraCousins,BAPainandPalliativeCareProgram, ChildhoodCancerResearchSection,Departmentof Department of Pediatrics, David Geffen School of Pediatric Hemato-Oncology and the Cancer MedicineatUniversityofCaliforniaatLosAngeles, Research Center,Edmondand Lily Safra Children CA,USA Hospital, Sheba Medical Center, Tel-Hashomer. Associate Professor, Sackler Faculty of Medicine, Ronit Elhasid, MD Head, Pediatric Hematology Tel-AvivUniversity,Israel Oncology Department, Tel Aviv Sourasky Medical Center, Sackler Faculty of Medicine, Tel-Aviv Meriel E.M. Jenney, MB ChB, MD, MRCP, University,Israel FRCPCH Consultant Paediatric Oncologist, Children’sHospitalforWales,Cardiff,UK Subhadra Evans, PhD Pain and Palliative Care Program, Department of Pediatrics, David Geffen Michal M. Kreitler, MA, School of Psychology, School of Medicine at University of California at Tel-Aviv University, Israel; Psychooncology LosAngeles,CA,USA Research Center, and Pediatric Institute of x LISTOFCONTRIBUTORS Hemato-Oncology, Sheba Medical Center, Children’s Hospital, Rambam Health Care Tel-Hashomer,Israel Campus, Haifa, Israel Shulamith Kreitler, PhD, Professor, School of Elizabeth G. Pinsky, MD Child and Adolescent Psychological Sciences, Tel-Aviv University; Psychiatry Resident, Massachusetts General/ Faculty of Social Welfare and Health Sciences, McLeanHospital,MA,USA University of Haifa; Head, Psychooncology Research Center, Sheba Medical Center, Tel SergeyPostovsky,MDDeputyDirector,Department Hashomer,Israel of Pediatric Oncology/Hematology, Meyer Children’s Hospital, Rambam Health Care Elena Krivoy, MSc Senior Clinical and Medical Campus. Assistant Professor in Pediatrics, Faculty Psychologist. DepartmentofPediatricHematology of Medicine, Technion – Israel Institute of Oncology, Meyer Children’s Hospital, Rambam Technology,Haifa,Israel Health Care Campus, Technion Israel- Institute of Technology, The Bruce Rappaport Faculty of Paula Rauch, MD Department of Psychiatry, Medicine,Haifa,Israel Massachusetts General Hospital,HarvardMedical School,Boston,MA,USA Gary Kupfer, MD Professor of Pediatrics and Pathology,Chief,SectionofPediatricHematology- GideonRechavi,MD,PhDDirector,CancerResearch Oncology, Yale School of Medicine, New Haven, Center, ShebaMedicalCenter, Tel-Hashomer. The CT,USA Gregorio and Dora Shapiro professor for Hematology Malignancies, Sackler School of Bob F. Last, PhD Emeritus Professor of Pediatric Medicine,Tel-AvivUniversity,Israel Psychology,VUUniversity,AmsterdamandEmma Kinderziekenhuis, Academic Medical Centre, RivkaRosenkranz,MEdBAEducationalCounselor, Amsterdam,Netherlands Department of Pediatric Hematology Oncology, Meyer Children’s Hospital, Rambam Health Care Amita Mahajan, MD Department of Paediatric Campus,Haifa,Israel Oncology, Children’s Hospital for Wales, Heath Park,Cardiff,UK DavidJ.Schonfeld,MD,FAAPDirectorofNational Center for School Crisis and Bereavement and Andr(cid:1)esS.Martin,MPHRivaAriellaRitvoProfessor Director of the Division of Developmental and of PediatricOncology Psychosocial Services, Child Behavioral Pediatrics, Cincinnati Children’s Study Center, YaleUniversity SchoolofMedicine; HospitalMedicalCenter,Cincinnati,OH,USA and Smilow Cancer Hospital at Yale-New Haven, NewHaven,CT,USA Elsa Segev-Shoham, MA Pediatric Oncology Unit, Haemek Medical Center, Afula, Israel; Former Maria E. McGee, MD, MS, MPH Child and member of the board of the Israeli Society for Adolescent Psychiatry Fellow, Georgetown Psycho-Oncology; Inspector of Special Education UniversityHospital,Washington,DC,USA fortheIsraeliMinistryofEducation,Israel Daniel Oppenheim, MD, PhD Psychoanalyst, Paris, Aziza T. Shad, MD Chief, Division of Pediatric France.Formerseniorpsychiatrist,GustaveRoussy Hematology/Oncology, Blood, and Marrow CancerInstitute,Villejuif,France Transplantation, Amey Distinguished Professor of Neuro-Oncology and Childhood Cancer, Maryland Pao, MD Clinical Director, National Lombardi Comprehensive Cancer Center and Institute of Mental Health, National Institutes of Georgetown University Hospital, Washington, Health,DepartmentofHealthandHumanServices, DC, USA Bethesda,MD,USA Dafna Munitz-Shenkar, R.N, M.A Research Monique Peretz Nahum, MD, Director Long Term Coordinator Nurse, Pediatric Hemato-Oncology, Follow Up Outpatient Clinic, Department of Edmond andLilySafraChildren’sHospital,Sheba Pediatric Hematology Oncology, Meyer MedicalCenter,TelHashomer,Israel LISTOFCONTRIBUTORS xi Michael Silbermann, MD, PhD Executive Director, Hospital, Rambam Health Care Campus, Haifa, MiddleEastCancerConsortium,Halifa,Israel Israel Jane E. Skeen, BSc, MBChB Pediatric Oncologist, Amos Toren, MD, PhD Head Pediatric Hemato- Starship Blood and Cancer Centre, Starship ocology Edmond and Lily Safra Children’s Children’sHospital,Auckland,NewZealand Hospital,TheShebaMedicalCenter-TelHashomer affiliated to The Sackler School of Medicine, MargaretL.Stuber,MDViceChairforEducationin Tel-AvivUniversity,Tel-Aviv,Israel Psychiatry, Daniel X. Freedman Professor, Psychiatry and Biobehavioral Sciences, David M. Louise Webster, MBChB, FRACP, FRANZCP GeffenSchoolofMedicineatUCLA,CA,USA Child and Adolescent Psychiatrist, Department Psychological Medicine, University of Auckland, SusanD.Swick,MD,MPHDirector,Parenting Ata Pediatric Consultation Liaison Psychiatry Team, Challenging Time (PACT, Program at the Vernon Starship Children’s Hospital, Auckland, New CancerCenter,NewtonWellesleyHospital;Medical Zealand Director, Mental Health Services, Vernon Cancer Center at Newton Wellesley Hospital; Attending Lori Wiener, PhD Co-Director, Behavioral Science Psychiatrist, Massachusetts General Hospital, Core; Head, Psychosocial Support and Research, Division of Child Psychiatry; Instructor in NCI,POB,Bethesda,MD,USA PsychiatryHarvardMedicalSchool;MA,USA LonnieZeltzer,MDPainandPalliativeCareProgram, Ciporah S. Tadmor, PhD Hospital-Based Medical Department of Pediatrics, David Geffen School of Psychologist, DepartmentofPediatricHematology MedicineatUniversityofCaliforniaatLosAngeles, Oncology Specialist in Medical Psychology, CA,USA ConsultantinPrimaryPrevention,MeyerChildren’s Foreword ItisanhonorandpleasuretowritetheForewordfor Idedicatedthefirsteditiontomygrandson,Gabriel, the second edition of this important textbook of who had just died of hepatoblastoma, aged 3. I con- pediatric psycho-oncology. By identifying the inter- tinuetohonorhismemory,likeotherprofessionalsin national leaders in the field, the editors present a thefield, whohave shared a similarloss, to carry the remarkable view of the state of the art in pediatric workforwardasamemorialtohimandtothechildren psycho-oncology,asweknowittoday,ofthemanage- whom many pediatric oncologists remember with mentofsymptomsandpsychosocialcare.Icommend equallove,sadnessandyetjoyfortheirshortlivesand themforitandalsoIcommendthisbooktothereader. thepleasuretheybrought us.Thestrugglegoes onto Sincethefirsteditionwaspublished,severalimpor- reduce the numbers of children who do not survive, tantstudieshavebeencarriedoutandtheimportance andalsotocontinuemakingour own contributionto of the care of the total child, not just the tumor, has improve the quality of life of those children during becomemorewidelyrecognized.Anacknowledgement theirillnesstobethebest possible.Thisdedicationof ofthisisthefactthatin2010theInternationalPediat- purposeistheleastthatwecandotorememberthose ricOncologySociety(SIOP)endorsedthestatementof whom we have loved and lost. I am grateful to be a the International Psycho-Oncology Society and the part of thisimportant effort to makethemost up-to- International Union Against Cancer (UICC) that a date research results available to pediatric oncology new standard of quality cancer care has been estab- teamsaroundtheworld. lished: quality cancer care today must integrate the psychosocial domain into routine cancer care. JimmieHolland,MD The SIOP Board, at its meeting in Boston, MA, in WayneE.ChapmanChairinPsychiatricOncology September,2010,endorsedthisstatementasitapplies MemorialSloan-KetteringCancerCenter tothecareofchildrenwithcancer.Thesearelandmark NewYork,NY statementswhichwillencouragethefieldtomovefor- November2011 ward more rapidly with this policy support from the majoroncologyinternationalsocieties.