Cancer in Children and Young People Cancer in Children and Young People: A c ute Nursing Care. Edited by Faith Gibson and Louise Soanes © 2008 John Wiley & Sons, Ltd. ISBN: 978-0-470-05867-1 Cancer in Children and Young People Acute Nursing Care Edited by Faith Gibson RSCN, RGN, Onc Cert, Cert Ed, MSc, PhD, FRCN, Senior Lecturer in Children’s Cancer Nursing Research, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust, London Louise Soanes RSCN, RGN, MSc, BSc (Hons), Senior Sister for Children’s Services, the Royal Marsden Hospital NHS Trust, Sutton Copyright©2008 JohnWiley&SonsLtd,TheAtrium,SouthernGate,Chichester, WestSussexPO198SQ,England Telephone (cid:2)+44(cid:3)1243779777 Email(forordersandcustomerserviceenquiries):[email protected] VisitourHomePageonwww.wiley.com AllRightsReserved.Nopartofthispublicationmaybereproduced,storedinaretrievalsystemortransmittedinany formorbyanymeans,electronic,mechanical,photocopying,recording,scanningorotherwise,exceptundertheterms oftheCopyright,DesignsandPatentsAct1988orunderthetermsofalicenceissuedbytheCopyrightLicensing AgencyLtd,90TottenhamCourtRoad,LondonW1T4LP,UK,withoutthepermissioninwritingofthePublisher. 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OtherWileyEditorialOffices JohnWiley&SonsInc.,111RiverStreet,Hoboken,NJ07030,USA Jossey-Bass,989MarketStreet,SanFrancisco,CA94103-1741,USA Wiley-VCHVerlagGmbH,Boschstr.12,D-69469Weinheim,Germany JohnWiley&SonsAustraliaLtd,42McDougallStreet,Milton,Queensland4064,Australia JohnWiley&Sons(Asia)PteLtd,2ClementiLoop#02-01,JinXingDistripark,Singapore129809 JohnWiley&SonsCanadaLtd,6045FreemontBlvd,Mississauga,ONT,L5R4J3,Canada Wileyalsopublishesitsbooksinavarietyofelectronicformats.Somecontentthatappearsinprintmaynotbe availableinelectronicbooks. LibraryofCongressCataloginginPublicationData Gibson,Faith. Cancerinchildrenandyoungpeople/FaithGibsonandLouiseSoanes. p. ; cm.—(Wileyseriesinnursing) Includesbibliographicalreferencesandindex. ISBN978-0-470-05867-1(cloth:alk.paper) 1. Cancerinchildren—Nursing. 2. Cancerinadolescence—Nursing. I. Soanes,Louise. II. Title. III. Series. [DNLM:1. Neoplasms—nursing. 2. Neoplasms—therapy. 3. Adolescent. 4. Child. 5. OncologicNursing—methods. 6. PediatricNursing—methods. WY156G4485c2007] RC281.C4G522007 618.92(cid:2)994—dc22 2007024695 BritishLibraryCataloguinginPublicationData AcataloguerecordforthisbookisavailablefromtheBritishLibrary ISBN978-0-470-05867-1 Typesetin9.5/11.5ptPalatinobyIntegraSoftwareServicesPvt.Ltd,Pondicherry,India PrintedinSingaporebyMarkonoPrintMediaPteLtd Thisbookisprintedonacid-freepaperresponsiblymanufacturedfromsustainableforestry inwhichatleasttwotreesareplantedforeachoneusedforpaperproduction. Contents Preface xi Safehandling 21 Foreword xiii Reconstitutionandpreparationof Contributors xv chemotherapeuticagents 22 Acknowledgements xvii PersonalProtectiveEquipment(PPE) 22 Workpractices 23 Patientsupport 25 Part 1 Chemotherapy 1 Settingforchemotherapyadministration 25 Administrationofchemotherapy 27 Commentary:Chemotherapy 3 Routesofadministration 28 JamieCargill Intrathecalroute 31 Theintramuscularandsubcutaneousroutes 32 1. PrinciplesofChemotherapy 7 References 33 AngelaHoulston 4. SideEffectsofChemotherapy 35 Thehistoryofthedevelopmentof KarenSelwood chemotherapy 7 Introduction 35 Cellcycle 7 Gastrointestinaltract 36 Growthfraction 8 Tastealteration 42 Pharmacokineticsandpharmacodynamics 9 Nauseaandvomiting 43 Protocoldevelopmentandclinicaltrials 9 Pharmacologicalinterventions 46 Considerationswhenplanning Anorexia/weightloss 48 chemotherapytreatments 10 Haematologicalproblems 55 Treatmentapproaches 11 Thecompromisedimmunesystem 60 References 13 Viralinfections 60 Cutaneoussideeffects 61 2. ChemotherapyAgents 15 Conclusion 65 AngelaHoulston References 65 Classificationofdrugs 15 References 19 5. OncologicalEmergencies 73 KarenSelwood 3. AdministrationofChemotherapy 21 Introduction 73 AngelaHoulston Septicshock 73 Safepracticewithcytotoxicdrugs: Homecare 74 legislation 21 Disseminatedintravascularcoagulation(DIC) 75 Consent 21 Anaphylaxis 77 vi Contents Acutetumourlysissyndrome(ATLS) 77 Support 109 Hyperuricaemia 79 Preparationofchildren 110 Hyperkalaemia 80 Conditioningregimens 113 Hyperphosphataemiaandhypocalcaemia 81 Preparationofasiblingdonor 116 NursingimplicationsofATLS 81 Ethicaluseofsiblingdonors 117 Spinalcordcompression 82 Savioursiblings 121 Conclusion 82 Preparationofnon-donorsiblings 122 References 82 References 122 6. FutureTrends 85 9. Collection and Infusion of Bone KarenSelwood Marrow,PeripheralBloodStemCells andUmbilicalCordCells 125 Introduction 85 NikkiBennett-ReesandSianHopkins Treatmentstrategies 86 Targetedapproaches 86 Collectionofbonemarrow 125 Proteasome 87 Complicationsofdonation 126 Genetherapy 87 Collectionofperipheralbloodstemcells Tumourvaccines 88 (PBSC) 126 Hormonetherapy 88 Venousaccess 128 Combinationtherapy 88 Stemcellcollection 129 Newtreatmentsforcancer– Collectionofumbilicalcord thenurse’srole 88 bloodcells 130 References 89 Issuessurroundingumbilicalcord banking 131 Part 2 Haematopoietic Stem Cell Bonemarrow/stemcellinfusion 131 Transplantation 91 References 133 Commentary:HaematopoieticStemCell Transplantation 93 10. ProtectiveIsolation:NursingIssues 135 HelenWebster NikkiBennett-ReesandSianHopkins Introduction 135 7. Background to the Haematopoietic Infectionprophylaxis 136 Stem Cell Transplant (HSCT) Protectiveisolation 137 Procedure 97 Dietaryrestrictions 138 NikkiBennett-ReesandSianHopkins Mouthcare 139 Skincare 140 History 97 Infectionscreening 140 Typesoftransplant 98 Theeffectsofisolation 140 Diseasesforwhichhaematopoieticstemcell References 141 transplantisatreatmentmodality 99 Tissuetyping 100 11. Complications of Stem Cell Adultunrelateddonors 102 Transplant 143 References 105 NikkiBennett-ReesandSianHopkins 8. Preparation for Bone Marrow Introduction 143 Transplant 107 Mucositis 143 NikkiBennett-Rees,SianHopkinsand Treatmentandnursingimplications 144 JoannaStone Pancytopenia 147 Thefamily 107 Haematologicalcomplications 147 Negotiation 109 Infection 150 Contents vii Veno-occlusivedisease 154 Pain 184 Graftversushostdisease(GVHD) 156 Centralvenousaccess 185 Graftversusleukaemia(GVL) 159 Conclusion 186 References 160 References 186 12. DischargePlanningandPsychosocial 15. GeneralSurgery 187 IssuesfortheFamily 163 RachelHollis,SharonDentonand NikkiBennett-ReesandSianHopkins GillChapman Dischargeplanning 163 Introduction 187 Psychosocialeffectsofstemcelltransplant Thechallengeofsurgicalcarein onthefamily 166 paediatriconcology 188 References 168 Surgeryasadiagnostictool 189 Surgeryasatreatmentmodality 192 13. StaffSupportinStemCellTransplant Preparingthechildandthefamilyfor Units 169 surgery 198 SianHopkins Post-operativenursingcare 201 Dischargeplanning 206 Educationalneedsofnursesinbloodand Lateeffectsofsurgicaltreatment 206 bonemarrowtransplantunits 170 Surgeryinsupportivecare 208 References 171 Managementofinfection 212 Surgerytoavoidthecomplicationsof 14. Further Developments in Stem radiotherapy 213 CellTransplantation 173 Futuretrendsinsurgery 214 NikkiBennett-Rees,SianHopkins,Lesley HendersonandJinhuaXu-Bayford References 214 Genetherapy 173 Commentary:Neuro-oncology 219 Whatisgenetherapy? 173 JennieSacree Genetherapyprospectsforprimary immunodeficiencies 174 16. Neuro-oncology 223 Whatdoesthegenetherapyprocess LindyMayandBethWard involveforthechild? 174 Introduction 223 Careofthechildundergoinggenetherapy Overviewofbraintumours 223 forX-linkedSCID 176 Increasedintracranialpressureand Careofthechildundergoinggenetherapy hydrocephalus 225 forADA-SCIDorCGD 177 Tumourtypes 226 Parentalsupport 178 Investigationsintobraintumours 227 Risksandsideeffectsofgene Neurologicalassessment 228 therapy 178 Playtherapy 232 Thefuture 179 Themultidisciplinaryteam 232 References 179 Pre-operativecare 233 Intra-operativecare 233 Part 3 Surgery 181 Post-operativemanagement 234 Long-termconcerns:morbidityand Commentary:GeneralSurgery 183 mortality 236 CharlieRogers Jack’sjourneythroughCNStumour Introduction 183 treatment 236 Diagnosis 183 Ongoingneedsofachildwithabrain Continuityofcare 183 tumour 237 viii Contents Adjuvanttreatment:specificsof Conclusion 286 treatingachildwithaCNStumour 239 References 286 LateeffectsofCNStumoursandacute rehabilitationneeds 242 19. AdministrationofRadiotherapy 289 Rehabilitationneeds 244 MonicaHopkins Secondmalignancy 244 Introduction 289 Dischargeplanning 244 Externalbeamtherapy(teletherapy) 289 Relapseandchemotherapyclinicaltrials 245 Brachytherapy 297 Relapse:thechild 245 Useofunsealedsources(intravenous Palliativecare 245 radioactivematerials) 299 Thefutureofneuro-oncology 246 Administrationofalternativeradiotherapy References 247 techniques 302 Whatdoesthefutureholdfor Commentary:PrimaryBoneCancerin radiotherapy? 304 YoungPeople 251 References 306 LinRussell 20. TumoursandRadiotherapyTreatment 311 17. PrimaryBoneCancerinYoung MonicaHopkinsandCorneliaScott People 255 Braintumours 311 ChrisHenry Adverseeffectsofradiotherapyinthe Introduction 255 treatmentofbraintumours 312 Typesoftumoursandtheir AcutelymphoblasticleukaemiawithCNS presentation 257 involvement 314 Treatmentoptions 260 Tumoursoftheheadandneck 315 Limbconservationsurgery 262 Retinoblastoma 315 Amputation 265 Non-Hodgkin’slymphoma 316 Alteredbodyimage 268 Hodgkin’slymphoma 316 Dischargeplanning 268 Radiotherapyforabdominaltumours 317 Lateeffects 269 Malignantmesenchymaltumourssuchas Futuretrends 272 rhabdomyosarcoma 317 Impactofsetting 273 Wilms’tumour 317 References 275 Neuroblastoma 318 Pelvicirradiation 318 Part 4 Radiotherapy 279 Extremityradiation 319 Conclusion 319 18. TheNatureofRadiotherapy 281 References 320 MonicaHopkins 21. Acute and Sub-acute Side Effects Introduction 281 ofRadiotherapy 321 Indicationsfortheuseofradiationinthe MonicaHopkinsandCorneliaScott careofchildrenwithcancer 282 Thenatureofradiation 282 Introduction 321 Artificialproductionofradiationfor Acutereactionsinhealthytissue 321 clinicaluse 283 Skin 322 Radiationdose 284 Thegastrointestinaltract 328 Effectofionisingradiationonhumantissue 284 Mouth 328 Hazardstohealthytissueduring Promotionofnutritionalintake 331 radiotherapy 285 Paincontrol 332 Contents ix Smallintestine 333 Hearing 373 Bonemarrow 334 Gastrointestinal 374 Hairfollicles 335 Cardiac 375 Fatigue 335 Renalandbladder 376 Brain 336 Pulmonary 377 Pneumonitis 337 Secondmalignancies 378 Cystitis 337 References 379 Conclusion 338 References 338 25. The Role of the Nurse in Long-TermFollow-Up 383 22. The Role of Radiotherapy in BeverlyHorne PalliativeCare 343 Assessment,planning,implementationand MonicaHopkins evaluationofprogrammesofcare 383 Thedecisiontouseradiotherapyinthe Supportandadvice 384 palliativecareofchildren 343 Liaisonandeducation 384 Radiotherapyinoncologicalemergencies 344 Provisionandfacilitationofalternative Radiotherapyinendoflifesymptom modelsofcare 385 management 346 Researchandaudit 386 References 348 Healthpromotionprovision 387 ParticipationinspecialistLTFU Part 5 Late Effect of Cancer clinics 387 Therapies 351 Conclusion 387 References 387 23. OverviewofLong-TermFollow-Up 353 SusanMehta 26. Health Promotion for Long-Term Follow-UpPatients 389 Futurechallenges 354 BeverlyHorne Long-termeffectsofcancertreatment 354 Thenursingrole 354 Smoking 390 Healtheducation 355 Alcoholconsumption 391 Conclusion 355 Recreationaldruguse 391 References 355 Nutrition,physicalactivityandachievinga healthyweight 391 24. Potential Physical Issues Breastawareness 393 FollowingCancerTreatment 357 Testicularself-examination 393 RuthElsonandSusanMehta Sexualhealth 393 Sunprotection 394 Endocrinopathies 357 Theoreticalapproachesand Thyroidgland 358 models 394 Hypothalamicpituitaryaxis 359 Conclusion 395 Gonadaldysfunction 360 References 395 Fertility 363 Liver 365 27. Quality of Life in Long-Term Neurologicalimpairment 366 SurvivorsofChildhoodCancer 397 Neuropsychological 368 AnthonyPenn Eyes 369 Craniofacialanddental 370 Definingqualityoflifeinthehealth-care Skin 371 setting? 397 Musculoskeletal 371 Physicalfunction 398 x Contents Psychologicalfunction 398 Interpersonalrelationshipsandmarriage 401 Cognition 399 Conclusion 401 Socialfunction 399 References 402 Education 400 Employmentandinsurance 400 Index 405 Preface The first edition of this text, entitled Paediatric 60% of this population will have one or more Oncology: Acute Nursing Care, was published in treatment-ordisease-relatedlateeffects.Thereare 1999. ‘A practical approach focusing on the also long-term psychosocial late effects associ- detailed nursing management of care, under- ated with a childhood cancer diagnosis that may pinned by theory and research’ was the main aim impinge on a young person’s quality of life, and ofthetextbook(Gibson&Evans,1999,p.503).We we felt it important that the new edition should would suggest that this has been achieved. The reflectthis. many‘tatteredcovers’andwell-thumbedcopiesof What remains the same is the emphasis on thebookweseeonclinicalunitsshowthebookhas the nurse’s role as a key member of the multi- become a familiar companion to many children’s professional team, embracing the philosophy of cancernursesintheUnitedKingdomandbeyond. family-focusedcare,respectfortheyoungperson’s So much so that it is fondly known as simply ‘the growing autonomy and negotiation of care. There RedBook’. are common threads that run through the text, In this much awaited second edition we have for example, psychosocial issues, family teach- built on the success of ‘the Red Book’, taking into ing, health education and involving children and consideration comments made to us by nurses in young people in decisions about their care. Like practice and recognising the changes in care over the first edition, the text is presented in sections the years. First, you will notice that the title has (though now called parts), that stand alone, with changedtoCancerinChildrenandYoungPeople.We referencesforeachplacedattheendofthechapter, feel this more appropriately reflects the emphasis so the reader can focus on a particular area of of practice where the care of children and young interest without needing to scan the whole text. people is perceived as two separate and distinctly Some parts include a commentary from practi- different fields of practice within cancer care. In tioners in the field, and these are useful reflec- recognition of the many transitions in the cancer tionsonthecontributionoftheparttodeveloping journey between acute to chronic care, we have practice. chosen to let go the second part of the origi- Wehavewelcomedsomenewauthorswhohave nal title. Second, you will notice that there is a worked tirelessly on the task, and have sought to new part to the book related to long-term follow- update each section in terms of new areas of clin- up care, late effects and issues about survivor- ical practice as well as research. We acknowledge ship. By the year 2010, 1 in 715 young people the work of previous authors, namely Gaynor will be survivors of cancer. Despite such positive Young, Louise Hooker, Sarah Palmer, Phillipa increasesinsurvival,weknowthatapproximately Chesterfield, Hilary Brocklehurst, Jane Watson,
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