ECCO Essential Requirements for Quality Cancer Care: Colorectal Cancer. A critical review

ContentslistsavailableatScienceDirect

Critical Reviews in Oncology/Hematology

j ou rn a l h o m e pa g e :w w w . e l s e v i e r . c o m / l o c a t e / c r i t r e v o n c

ECCO Essential Requirements for Quality Cancer Care: Colorectal Cancer. A critical review

Geerard Beets

, David Sebag-Montefiore

, Elisabeth Andritsch

, Dirk Arnold

, Marc Beishon

, Mirjam Crul

, Jan Willem Dekker

, Roberto Delgado-Bolton

, Jean-Franc¸ ois Fléjou

, Wolfgang Grisold

, Geoffrey Henning

, Andrea Laghi

, Jozsef Lovey

, Anastassia Negrouk

, Philippe Pereira

, Pierre Roca

, Tiina Saarto

, Thomas Seufferlein

, Claire Taylor

, Giampaolo Ugolini

, Cornelis van de Velde

, Bert van Herck

, Wendy Yared

, Alberto Costa

, Peter Naredi

aEuropeanSocietyofSurgicalOncology(ESSO);DepartmentofSurgery,NetherlandsCancerInstitute,Amsterdam,TheNetherlands

bEuropeanSocietyforRadiotherapy&Oncology(ESTRO);LeedsInstituteofCancerandPathology,UniversityofLeeds,LeedsCancerCentre,UnitedKingdom

cInternationalPsycho-OncologySociety(IPOS);ClinicalDepartmentofOncology,UniversityMedicalCentreofInternalMedicine,MedicalUniversityof Graz,Graz,Austria

dEuropeanSocietyforMedicalOncology(ESMO);InstitutoCUFdeOncologia(I.C.O.),Lisbon,Portugal

eEuropeanSchoolofOncology,Milan,Italy

fEuropeanSocietyofOncologyPharmacy(ESOP);DepartmentofClinicalPharmacy,OnzeLieveVrouweGasthuis,Amsterdam,TheNetherlands

gEuropeanSocietyofColoproctology(ESCP);DepartmentofSurgery,ReinierdeGraafGasthuis,Delft,TheNetherlands

hEuropeanAssociationofNuclearMedicine(EANM);DepartmentofDiagnosticImaging(Radiology)andNuclearMedicine,SanPedroHospitalandCentre forBiomedicalResearchofLaRioja(CIBIR),UniversityofLaRioja,Logro˜no,LaRioja,Spain

iEuropeanSocietyofPathology(ESP);Serviced’anatomieetcytologiepathologiques,hôpitalSaint-Antoine,AP-HP,FacultédeMédecinePierreetMarie Curie,Paris,France

jEuropeanAssociationofNeuro-Oncology(EANO);LudwigBoltzmannInstituteforExperimentalundClinicalTraumatology,Vienna,Austria

kEuropaColon

lEuropeanSocietyofRadiology(ESR);DepartmentofRadiologicalSciences,OncologyandPathology,Sapienza−UniversityofRome,Rome,Italy

mOrganisationofEuropeanCancerInstitutes(OECI);NationalInstituteofOncology,Budapest,Hungary

nEuropeanOrganisationforResearchandTreatmentofCancer(EORTC),Belgium

oCardiovascularandInterventionalRadiologicalSocietyofEurope(CIRSE);ClinicforRadiology,Minimally-invasiveTherapiesandNuclearMedicine, SLK-ClinicsGmbHHeilbronn,Karl-Ruprecht-UniversityofHeidelberg,Heilbronn,Germany.(ThomasHelmberger,CIRSE,andKlinikumBogenhausen, Munich,alsoadvisedoninterventionalradiology)

pEuropeanCanCerOrganisation(ECCO),Belgium

qEuropeanAssociationforPalliativeCare(EAPC);DepartmentofPalliativeCare,ComprehensiveCancerCentre,UniversityofHelsinkiandHelsinki UniversityHospital,Helsinki,Finland

rUnitedEuropeanGastroenterology(UEG);DepartmentofInternalMedicine,UlmUniversity,Ulm,Germany

sEuropeanNursingOncologySociety(EONS);LondonNorthWestHealthcareNHSTrust,UnitedKingdom

tInternationalSocietyofGeriatricOncology(SIOG);ColorectalandGeneralSurgery,OspedalepergliInfermi,Faenza,Italy

uEuropeanSocietyofSurgicalOncology(ESSO);EuropeanRegistrationofCancerCare(EURECCA);DepartmentofSurgery,LeidenUniversityMedical Centre,Leiden,TheNetherlands

vEuropeanCanCerOrganisation(ECCO)PatientAdvisoryCommittee

wAssociationofEuropeanCancerLeagues(ECL)

xEuropeanSchoolofOncology(ESO),Milan,Italy

yEuropeanCanCerOrganisation(ECCO);DepartmentofSurgery,InstituteofClinicalSciences,SahlgrenskaAcademy,UniversityofGothenburg, Gothenburg,Sweden

Contents

Preamble...83

Essentialrequirementsforqualitycancercare:colorectalsummarypoints...83

1. Introduction:whyweneedqualityframeworks...83

2. Colorectalcancer(CRC):keyfactsandchallenges...83

∗ Correspondingauthor.

E-mailaddress:peter.naredi@gu.se(P.Naredi).

http://dx.doi.org/10.1016/j.critrevonc.2016.12.001

1040-8428/©2016TheAuthors.PublishedbyElsevierIrelandLtd.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/by- nc-nd/4.0/).

2.1. Keyfacts...83

2.1.1. Riskfactorsandprevention...84

2.1.2. Screening...84

2.1.3. Diagnosisandtreatment...84

2.2. ChallengesinCRCcare...84

2.2.1. Inequalities...84

2.2.2. Diagnosisandscreening...84

2.2.3. Treatment...84

2.2.4. Survivorship...84

3. Organisationofcare...85

3.1. Carepathwaysandtimelines...85

3.2. CRCcentres/units:requirements ... 85

3.3. Themultidisciplinaryteam...85

4. DisciplineswithinthecoreMDT ... 86

4.1. Gastroenterologyandendoscopy...86

4.2. Pathology...86

4.3. Radiology/imaging...86

4.4. Surgery...87

4.5. Radiotherapy...87

4.6. Medicaloncology...87

4.7. Interventionalradiology...87

4.8. Nursing...88

5. DisciplinesintheexpandedMDT...88

5.1. Nuclearmedicine...88

5.2. Geriatriconcology...88

5.3. Oncologypharmacy...88

5.4. Psycho-oncology...89

5.5. Dietandnutrition...89

5.6. Palliativecare...89

5.7. Rehabilitationandsurvivorship...89

5.8. Neuro-oncology...90

6. Otheressentialrequirements...90

6.1. Patientinvolvement,accesstoinformationandtransparency...90

6.2. Auditing,performancemeasurement,qualityassuranceandaccreditation...90

6.2.1. Furtherqualityandauditresources...91

6.3. Cancereducationandtraining...91

6.4. Clinicalresearch...91

7. Conclusion...91

References...91

a r t i c l e i n f o

Articlehistory:

Received1December2016 Accepted5December2016

a b s t r a c t

Background:ECCOessentialrequirementsforqualitycancercare(ERQCC)arechecklistsandexplanations oforganisationandactionsthatarenecessarytogivehigh-qualitycaretopatientswhohaveaspecific tumourtype.TheyarewrittenbyEuropeanexpertsrepresentingalldisciplinesinvolvedincancercare.

ERQCCpapersgiveoncologyteams,patients,policymakersandmanagersanoverviewoftheelements neededin anyhealthcare systemtoprovidehigh quality ofcare throughoutthepatient journey.

Referencesaremadetoclinicalguidelinesandotherresourceswhereappropriate,andthefocusison careinEurope.

Colorectalcancer:essentialrequirementsforqualitycare

•Colorectalcancer(CRC)isthesecondmostcommoncauseofcancerdeathinEuropeandhaswide variationinoutcomesamongcountries.Increasingnumbersofolderpeoplearecontractingthedisease, andtreatmentsforadvancedstagesarebecomingmorecomplex.Agrowingnumberofsurvivorsalso requirespecialistsupport.

•High-qualitycarecanonlybeacarriedoutinspecialisedCRCunitsorcentreswhichhavebothacore multidisciplinaryteamandanextendedteamofalliedprofessionals,andwhicharesubjecttoquality andauditprocedures.SuchunitsorcentresarefarfromuniversalinallEuropeancountries.

•Itis essential that, to meet European aspirations for comprehensive cancer control, healthcare organisationsimplementtheessentialrequirementsinthispaper,payingparticularattentiontomul- tidisciplinarityandpatient-centredpathwaysfromdiagnosis,totreatment,tosurvivorship.

Conclusion:Takentogether,theinformationpresentedinthispaperprovidesacomprehensivedescription oftheessentialrequirementsforestablishingahigh-qualityCRCservice.TheECCOexpertgroupisaware thatitisnotpossibletoproposea‘onesizefitsall’systemforallcountries,buturgesthataccessto multidisciplinaryunitsorcentresmustbeguaranteedforallthosewithCRC.

©2016TheAuthors.PublishedbyElsevierIrelandLtd.ThisisanopenaccessarticleundertheCC BY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/4.0/).

Preamble

ECCOessentialrequirementsfor qualitycancercare(ERQCC) arechecklistsandexplanationsoforganisationandactionsthatare necessarytogivehigh-qualitycaretopatientswhohaveaspecific tumourtype.

Theyareprimarilyorganisationalrecommendations,notclini- calguidelines,andareintendedtogiveoncologyteams,patients, policymakersandmanagers,anoverviewoftheelementsneeded inanyhealthcaresystemtoprovidehighqualityofcarethrough- outthepatientjourney.Referencesaremadetoclinicalguidelines andotherresourceswhereappropriate,andthefocusisoncarein Europe.

ThefoundationofthisECCOrequirementsseriesistheconcept ofquality,whichhasbecomeincreasinglyimportantinallaspects ofhealthcare,asthepopulationhasincreasingnumberofolder peopleneedingcare,asmanynewandcomplextreatmentscome intouse,andasmorepressureisputonusingresourceseffectively.

Policymakers and patients need to know that their healthcare workforce,technologyandfacilitiesareconfiguredoptimallyfor eachillness.Inthiscontext,improvingqualityofcancercaremeans deliveringcarethatistimely,safe,effectiveandefficient;putsthe patientatthecentreofcare;andgivesallpeopleequalaccessto high-qualitycare.

ThestructureoftheECCOERQCCseriesisthesameforeach tumourtype:

• Introduction:whyweneedcancerqualityframeworks

• Keyfactsandchallengesassociatedwiththetumourtypefrom diagnosistotreatment

• Organisationofcare:anoverviewofthepatientpathwayand overallrequirementstodelivercare

• Multidisciplinaryworking:inmoredetail,therequirementsfor coreand‘expanded’teamsinvolvedinthepatientpathway

• Measurementandaccountability:qualityassuranceand audit, patientinvolvementandaccesstoinformation.

Essentialrequirementsforqualitycancercare:colorectal summarypoints

• Colorectalcancer(CRC)isthesecondmostcommoncauseofcan- cerdeathinEuropeandhaswidevariationinoutcomesamong countries.Increasingnumbersofolderpeoplearecontractingthe disease,andtreatmentsforadvancedstagesarebecomingmore complex.Agrowingnumberofsurvivorsalsorequirespecialist support.

• High-qualitycarecanonlybeacarriedoutinspecialisedCRCunits orcentreswhichhavebothacoremultidisciplinaryteamandan extendedteamofalliedprofessionals,andwhicharesubjectto qualityandauditprocedures.Suchunitsorcentresarefarfrom universalinallEuropeancountries.

• It isessential that,to meetEuropeanaspirations forcompre- hensivecancercontrol,healthcareorganisationsimplementthe essentialrequirementsinthispaper,payingparticularattention tomultidisciplinarityandpatient-centredpathwaysfromdiag- nosis,totreatment,tosurvivorship.

1. Introduction:whyweneedqualityframeworks

Therehasbeenagrowingemphasis ondrivingupqualityin cancerorganisations,giventhatthereiswideagreementthatmuch careisnotaccessible,notwellcoordinatedandnotbasedoncurrent evidence.ThisisthestartingpointofareportbytheUSInstitute ofMedicine(IOM)in2013(Levit etal.,2013),which isbluntin describinga‘crisisincancercaredelivery’,asthegrowingnumber

ofolderpeoplewillmeanrisingcancerincidenceandnumbersof survivors,whiletherearepressuresonworkforcesamidrisingcosts ofcareandcomplexityoftreatments.

Notleast,theIOMnotesthatthefewtoolscurrentlyavailable forimprovingthequalityofcancercare−qualitymetrics,clinical practiceguidelines,andinformationtechnology−arenotwidely usedandallhaveseriouslimitations.

AnassessmentofthequalityofcancercareinEuropewasmade aspartofthefirstEUJointActiononCancer,theEuropeanPart- nershipforActionAgainstCancer(EPAAC,http://www.epaac.eu), whichreportedin2014thatthereareimportantvariationsinser- vicedeliverybetweenandwithincountries,withrepercussionsfor qualityofcare.Factorssuchaswaitingtimesandprovisionofopti- maltreatmentcanexplainaboutathirdofthedifferencesincancer survival,whilecancerplans,suchaswithanationalcancerplan thatpromotesclinicalguidelines,professionaltrainingandquality controlmeasures,mayberesponsibleforaquarterofthesurvival differences.

EPAACpaidparticularattentiontotheimportanceofproviding multidisciplinarycareforeachtumourtype,goingasfarastoissue apolicystatement(Borrasetal.,2014)thatemphasisedtheimpor- tanceofteamworking,ascancercareisundergoinga‘paradigm shift’fromadisease-basedapproachtoapatientcentredone,in whichincreasinglymoreattentionispaidtopsychosocialaspects, qualityoflife,patients’rightsandempowerment,comorbidities andsurvivorship.EPAACfurtherfocusedontheestablishmentof networksofexpertiseinregionswhereitisnotpossibletoestablish comprehensivecentres.

TheEUJointActiononCancerControl(CANCON,http://www.

cancercontrol.eu),whichreplacedEPAACfrom2014,isalsofocus- ingonqualityof cancercareand isdue topublishin 2017the EuropeanGuideonQualityImprovementinComprehensiveCancer Control.

Countrieshavebeenconcentratingexpertiseforcertaintumour typesindedicatedcentres,orunits,suchasforchildhoodandrare cancers,andmostcomprehensivecancercentreshaveteamsforthe maincancertypes.Forcommonadulttumours,however,atEuro- peanleveltherehasbeenwidespreadefforttoestablishuniversal, dedicatedunitsonlyforbreastcancer,followingseveralEuropean declarations thatseta target ofthe year2016for suchcareof allwomenandmenwithbreastcancertobetreatedinspecialist multidisciplinarycentres.Whilethistargethasbeenfarfrommet (Cardosoetal.,2016),theviewofECCO’sessentialrequirements expertgroupisthatthedirectionoftravelisforallmaintumour typestoadopttheprinciplesofsuchdedicatedcare.

For colorectalcancer(CRC),thismeansestablishingthecare pathwaysand multidisciplinaryteamsthataredescribedinthis document,andalsothesameapproachtoauditing,qualityassur- anceandaccreditationofa‘unit’thanisemerginginbreastcancer, andindeedforCRCinsomeEuropeancountries.

2. Colorectalcancer(CRC):keyfactsandchallenges

2.1. Keyfacts

• CRCisacommoncancerandthesecondmostcommoncauseof cancerdeathinEurope(afterlungcancer).In2012,about447,000 newcasesand215,000deathsfromCRCwereestimated,which was12.2%ofalldeathsfromcancerinEurope(Ferlayetal.,2013a).

• CRCisthesecondmostcommoncancerinwomenandthethird inmen,althoughthenumberofmenwhoarediagnosedanddie eachyearinEuropeishigherthanwomen(in2012,therewere

about242,000newcasesinmen,205,000inwomen;deathsin thatyearwere113,000and101,000).TheriskofcontractingCRC forpeopleundertheageof75in2012was3.51%inEurope(4.48%

men,2.73%women)(Ferlayetal.,2013b).

• In2012,the5-yearprevalenceofCRC(thosealive5yearsafter diagnosis),wasabout1.2millioninEurope,showingthatthere isalargepopulationofsurvivors.The5-yearsurvival ratefor Europewas57%forcolonand56%forrectalcanceraccordingto theEurocare-5study(Holleczeketal.,2015).The5-yearsurvival rateisassociatedwiththestageofCRCatdiagnosis,broadly:90%

forlocalstages,50%fordiseasethathasspreadtolymphnodes, and10–20%formetastaticdisease.

2.1.1. Riskfactorsandprevention

• Riskfactorsincludefamilyhistory,includinginheriteddisorders;

ahistoryofpolypsinthebowelandinflammatoryboweldisease;

lifestylefactors;andage:morethan90%ofCRCisdiagnosedin peopleintheir50sandolder.

• TheriskofdevelopingCRCcanbereducedby:

Avoidingobesityandweightgainaroundthemidsection

Notsmoking

Increasingtheintensityandamountofphysicalactivity

Limitingintakeofredandprocessedmeats

Eatingmorevegetablesandfruits

GettingtherecommendedlevelsofcalciumandvitaminD

Avoidingexcessalcohol

See for example: American Cancer Society. Can colorec- tal cancer be prevented? http://www.cancer.org/cancer/

colonandrectumcancer/detailedguide/colorectal-cancer- prevention.

2.1.2. Screening

• CRCisoneofthefewcancersthathaveevidenceforpopulation screening(breastandcervicalaretheothers).MostCRCdevelops frombenignpolyps,whichcanberemovedduringacolonoscopy.

In2003,theCounciloftheEuropeanUnioncalledonmember statesto implementscreening programmes for CRCin allEU countries.

• TheECCOexpertgroupsupportstheimportanceofscreeningin thepreventionandearlydetectionofCRCandalsocallsonEU memberstatestoensurethatappropriatepoliciesareadopted acrossEuropetoensurethatefficientCRCscreeningprogrammes areimplemented.

2.1.3. Diagnosisandtreatment

• Symptomsthatoftenleadtoa diagnosisofCRCarechangein bowelhabit,anaemia,fatigue,rectalbleedingandanabdominal mass.However,asmostpatientsareasymptomatic,screeningis ofgreatimportance.

• InvestigationstodetectCRCarecolonoscopy,sigmoidoscopy(for thelowercolon)andcomputedtomography(CT)colonography (alsocalledvirtualcolonoscopy).Biopsyandimaging/pathology reportsconfirmadiagnosisandthestageofthedisease−like mostcancers,CRCiscategorisedintofourclinicalstagesaccord- ingtoUnionforInternationalCancerControl(UICC)classification, fromlocalisedtotheliningofthecolon(stage1)tospreadtoother organs(stage4,ormetastaticdisease).

• Treatment: most patients with localised (early and locally advanced) CRChave surgery to remove thetumour and any affectedlymphnodes.Radiotherapyisusedpre-operativelyin rectalcancer,butnotoftenincoloncancerastoomuchhealthy tissuecan beexposed. Chemotherapyisusually offeredpost- operativelytopeoplewithlocaliseddiseasewithlymphnode

involvementto reducetherisk ofa recurrence.Patients with metastaticdiseaseshouldreceivesystemictreatment,including targetedtherapies,dependingoncharacteristicsoftheirdisease (includingmolecularbiology).Inselectedcases,treatmentfor metastaticdiseasecanincludelocaltreatment(surgery,radio- therapy,interventionalradiology)andcanaimtobecurative.

2.2. ChallengesinCRCcare

2.2.1. Inequalities

• CountriesinEasternandCentralEuropehavethelowestsurvival ratesforCRC.IntheEurocare-5study(Ferlayetal.,2013a),the highest5-yearsurvivalforcoloncancerwasfoundforpatients inBelgium,GermanyandIceland(62%)andlowestforpatients inLatvia(43%)(butlowersurvivalthanthe57%Europeanaver- agewasalsoobservedforpatientsinDenmark(54%)andCroatia (50%)).Forrectalcancer, thehighestsurvival wasfor patients inBelgiumandSwitzerland(63%)andlowestforthoseinLatvia (36%),butlowsurvivalwasalsoobservedforCroatia(49%)and Slovenia(50%).

• DiscriminationbyageissignificantinCRCbecausethemajority ofcasesareamongolderpeople−about60%ofcasesareinthose aged70andover,withthehighestincidenceinpeopleintheir mid-tolate-80s.Providingthecurrentstandardofcaretoolder peopleinallcancersisimportantandisparticularlychallenging inCRC,becauseofthenumbersandbecausetherecanbesev- eralco-morbiditiestomanage,andconsistentpartnershipwith geriatricspecialistscanbeneeded.

2.2.2. Diagnosisandscreening

• Embarrassmentandstigma:insomecountriesandculturesthere canbeareluctancetobotherdoctors,usuallyprimarycareGPs, withsymptoms of CRC.There is potential to do much more awarenessraisingonCRCthatcaninvolvepolicymakers,health professionalsandpatientgroups.

• ScreeningprogrammesdifferwidelyacrossEurope.Onlyaminor- ityofcountrieshaverolledoutpopulationscreening;othershave

‘opportunistic’,pilotornoprogrammes.

2.2.3. Treatment

• CRC, asone of themajorcancers, is treatedby a wide range ofhealthcareprovidersbutnotnecessarilybymultidisciplinary unitsandaccordingtoguidelinesandrecognisedcarepathways.

• SomepatientswithmetastaticCRCcanbecuredbutdonotalways getthemultidisciplinaryassessmenttheyshould.Forthemajor- ityofmetastaticCRCpatients,whocannotbecured,treatmentis particularlychallengingbecauseofthecomplexandwiderange oftreatmentoptions,andforwhichtherearevaryinggradesof evidenceofeffectiveness. Awarenessand availabilityof treat- mentoptionssuchastargetedtherapy alsovariesamongand withincountries.InCRC,thisisexemplifiedbycampaignsthat promote greaterawareness of metastaticdiseaseoptions and testingforbiomarkerstodeterminewhethercertaintherapiesare beneficial(forexample,GetPersonal,http://www.getpersonal.

global).

2.2.4. Survivorship

• Thenumberofcancersurvivorsisrisingquickly,andsomeCRC survivorssuffer formany years fromongoing conditions that result fromthe primary treatment of theircancer, such as a permanentstoma,bowelandurinaryproblems,andsexualdys- function(Jansen et al.,2011).Specialist supportivecare for a growingpopulationofCRCsurvivorsisbecomingamajorissue.

3. Organisationofcare

EssentialrequirementsfortheorganisationofCRCcareencom- pass:

• Cancercarepathways

• Timelinesofcare

• Minimumcasevolumes

• Multidisciplinaryteamworkingamongcoreandextendedgroups ofprofessionals,inadedicatedCRCcentreorunit

• Audit,performancemeasurement,qualityassuranceofoutcomes andcare

• Professionaleducation,enrolmentinclinicaltrialsanddelivery ofpatientinformation.

Thesetopicsareoutlinedinthefollowingsections,withrefer- encetonationalandEuropeanresourcesandclinicalguidelines, whereappropriate.

3.1. Carepathwaysandtimelines

• Careforcolorectalcancerpatientsshouldbeorganisedincare pathwaysthatchartthepatient’sjourneyfromtheirperspective ratherthanthatofthehealthcaresystem.(TheEuropeanPathway Associationdefinesacarepathwayas“acomplexinterventionfor themutualdecisionmakingandorganisationofcareprocessesfor awell-definedgroupofpatientsduringawell-definedperiod”.

Thisbroaddefinitioncoverstermssuchasclinical,critical,inte- gratedandpatientpathwaysthatarealsooftenused.Seehttp://

e-p-a.org/care-pathways.)Pathwaysshouldincorporatecurrent evidencesetoutinnationalandEuropeanguidelines.Anexem- plarofaCRCpathwayistheNationalInstituteforHealthand CareExcellence(NICE)pathway(NICEPathways,Colorectalcan- ceroverview.http://pathways.nice.org.uk/pathways/colorectal- cancer).AstheNICEguidancemakesclear,theoverallpathway forCRCcomprisesonlyafewmainsubsidiarypathways−sus- pectedCRCand referral,informationandsupportforpatients, diagnosis,staging,andcancertreatmentmanagement.

• Primarycarepractitionersaretheusualreferrersofthosewith suspected CRCand need timely access tohospital specialists andtypicallya diagnosisisestablishedbyendoscopy.In Eng- landandWales,themaximumtimeforanappointmenttocheck suspectedsymptomsofallcancersis2weeks(NICEPathways.

Suspectedcancerrecognitionandreferral:Gastrointestinaltract (lower)cancers.http://bit.ly/2gzGU58).SuspectedCRCidentified throughfaecaloccultscreeningprogrammesisreferredinthe sametime(2weeks).Othercountrieshave shortertargets:in theNetherlands,themaximumtimeforanappointmentwhen a malignancyis suspected is1 week.TheECCO expertgroup stronglyrecommendsthatcountriesensurethatwaitingtimes arebelowthesetimesasisthecaseinseveralEuropeancountries thatmakeurgentreferralswithin48h.

• Acomprehensiveexaminationofscreeninganddiagnosisisavail- ablein‘Europeanguidelinesforqualityassuranceincolorectal cancerscreeninganddiagnosis’(EuropeanCommission,2010).In EnglandandWales,about10%ofpatientswithCRCarecurrently diagnosed through screening, and 55% following GP referral (HealthcareQualityImprovementPartnership,2015).

• TimestoreportadiagnosisofCRCandtheopportunitytostart treatmentarecrucialtothewellbeingofpatientstoavoidasmuch anxietyaspossible.GuidelinesintheNetherlands,forexample, statethatthemaximumtimefordiagnosticandstagingproce- duresis3weeks,andthemaximumtimefromfirstappointment tofirsttreatmentis6weeks.

• Afteradiagnosis,itmustbecleartothepatientwhichprofes- sionalisresponsibleforeachstepinthetreatmentpathwaysand

whoisfollowingthepatientduringthejourney(usuallycalled acase manageror patientnavigator).Inmanycountries, case managersduringthemainstagesoftreatmentarecancernurses (Borrasetal.,2014),withsomebeingspecialistsinCRC.There mustalsobeamedicalprofessionalresponsibleforcoordinating treatmentmodalitiesandspecialties,namelytheleadoncology specialist.Thisisusuallyasurgeonormedicaloncologist,depend- ingonlocalagreementsandthestageofthedisease.

• SomepatientswithCRCpresentasemergencieswithanintesti- nalobstructionorperforation(thiscanbeasignificantnumber insomecountries−about20%ofCRCpatientsinEnglandand Wales).Whileitispreferableforthesepatientstobetreatedby thecolorectalteamfromthestart,thisisoftennotpossiblebut caremustbetransferredtothecolorectalteamstraightafterthe emergencyprocedure.

• Follow-upandsurvivorshiparemajorissuesinCRC.Typically, care pathwaysinclude surveillance for cancerrecurrence but patientsoftenhavetoseekhelpelsewhereforlongtermside- effects of treatment, by going to both acute and community facilities.Continuityandintegrationofallcaremustbeimple- mentedasgapsinlong-termcarecancausemuchdistress(Jansen etal.,2010).

3.2. CRCcentres/units:requirements

• Itisessentialforallpatientstobetreatedinamultidisciplinary centre;that membersofthemultidisciplinaryteamseea cer- tainannualnumberofcases;andthatmembersofthecoreteam dedicatesignificanttimetotreatingpatientswithCRC,although requirementsvaryaccordingtothevariousdisciplines.Basedon theexistingevidence,theECCOexpertgrouprecommendsthat forahospitaltobeconsideredasaCRCcentreitshouldmanage atleast100newCRCcasesayear.

• Therearethreepatientcategoriesthatusuallyrequiredifferent levelsofexpertiseandinfrastructure:

Uncomplicatedprimarycolorectalcancer

Loclyadvancedorrecurrentdisease

Metastaticdisease.

• Theexpertiserequiredforadvancedcasesoftenconcernscertain surgery,radiotherapyandspecialistinterventions,andaCRCunit thatdoesnothavethisexpertiseorfacilitiesshouldhaveclose referralcooperationwithcentresthatprovidethem.

• AllCRCunitsmusthaveafollow-upprogrammeinplaceinaccor- dancewithguidelines.

3.3. Themultidisciplinaryteam

Treatment strategies for all patients must be decided on, plannedanddeliveredasaresultofconsensusamongacoremul- tidisciplinary team (MDT)that comprises the mostappropriate membersfortheparticulardiagnosisandstageofcancer,patient characteristicsandpreferences,andwithinputfromtheextended communityofprofessionals.Theheartofthisdecisionmakingpro- cessisnormallyaweeklyormorefrequentMDTmeetingwhere patientsarediscussedwiththeobjectiveofbalancingtherecom- mendationsofclinicalguidelineswiththe‘reality’oftheindividual patient.

ToproperlytreatCRCitisessentialtohaveacoreMDTofdedi- catedhealthprofessionalsfromthefollowingdisciplines:

• Gastroenterology/endoscopy

• Pathology

• Radiology/imaging

• Surgery

• Radiotherapy

• Medicaloncology

• Interventionalradiology

• Nursing.

ThiscoreMDTmustdiscuss:

• Allnewpatientsafterdiagnosisandstagingtodecideonoptimal treatment

• Patientsaftermajortreatment,usuallysurgery,todecideonfur- thertreatment(suchasadjuvantchemotherapy)andfollow-up

• Patientswitharecurrenceduringfollow-uptodecideonoptimal treatment.

InCRC,therearecertainpatientswhodonotneedtobedis- cussedatafullMDTmeeting:

• Caseswithacleardecisionalgorithm,suchasearlytumours(T1 stagedisease),andadvanced adenomas (benignpolypsinthe colon)usuallyrequireonlygastroenterologists,pathologistsand surgeons

• Thosewithwidespreadandincurable metastaticdiseasemay needonlyradiologists,radiationoncologists,surgeons,medical oncologistsandpalliativecarespecialists.

Thepre-requisiteisaclinicalpathwayforeachcategorythat alsodetermineswhenpatientsmustbediscussedatafullmulti- disciplinarytumourboard.

Healthcareprofessionalsfromthefollowing disciplinesmust beavailablewhenevertheirexpertiseisrequired(the‘expanded’

MDT):

• Nuclearmedicine

• Oncologypharmacy

• Geriatriconcology

• Psycho-oncology

• Dietandnutrition

• Palliativecare

• Rehabilitationandsurvivorship

• Neuro-oncology.

Alldiscussionshavetobeminutedanddecisionsdocumentedin acomprehensiveandunderstandablemanner,andshouldbecome partofpatientrecords.WeeklyMDTmeetingsmustbeminuted andtheannualinternalauditmustbeincorporatedintoquality learningsystemsastheydevelop.

Itisessentialthatallrelevantpatientdata,suchaspathology reports,meetqualitystandardsandareavailableatthetimeofthe MDTmeeting.

4. DisciplineswithinthecoreMDT

4.1. Gastroenterologyandendoscopy

Theroleofthegastroenterologist/endoscopististo:

• AdviseonallmeansofprimaryandsecondarypreventionofCRC

• Perform relevant colonoscopies (including after surgery if needed)andpalliativeprocedureswhenrequired,suchascolonic stents

• Treatpolypsandearlylesions

• IdentifyandfollowuppatientsathighriskforofdevelopingCRC

• Manage long- and short-term gastrointestinal side-effects of treatment

• In some countries and settings, gastroenterologists are also responsiblefor systemictherapy (see alsosectiononmedical oncology).

Essentialrequirements:

• A gastroenterologist/endoscopist must have a qualification in diagnostic and interventional colonoscopy (e.g. according to numberofproceduresperformedayear,completenessofpro- cedures, adenomadetectionrate, numberof polypsremoved, asspecifiedbycountryregulations)(Kami ´nskietal.,2014;Rees etal.,2016;Bretthaueretal.,2016).

• Incountrieswheresystemictreatmentofgastrointestinalcancer iscarriedoutbygastroenterologists,theymusthaveaqualifi- cationandexpertiseinthesystemictreatmentofCRCandthe managementofside-effects(e.g.asdemonstratedbyacertain numberofchemotherapeuticcyclesandtargetedagentsgiven eachyear).Theymustalsofollowupaftersurgerytomakesure thatadjuvanttreatment,forexample,isappliedwheneveritis indicated.

4.2. Pathology

Pathology,includingmolecularpathology,isplayinganincreas- inglycriticalroleinthediagnosisofCRC.Theroleofthepathologist istoconductadetailed studyofthetumourbasedonthesam- pletakenfromthebiopsyandtoprepareapathologyreportfor discussionattheMDT.

Essentialrequirements:

• ThepathologistmusthaveexpertiseinreportingonCRCpreoper- ativebiopsiesandsurgicalspecimens:theymustknowrecently publishedguidelinesandreviewsonpathologicalCRCreporting (Nagtegaal,2015)andtheirpathologyreportsmustcontainalist ofitemsasrecommendedbyprofessionalorganisations(Quirke etal.,2011).Theuseofstructured(orsynoptic)reportsisstrongly encouraged(seeexamplesfromtheRoyalCollegeofPathology intheUKandtheRoyalCollegeofPathologistsofAustralasia) (Loughreyetal.,2014;RoyalCollegeofPathologistsofAustralasia, 2013).

• Withtheincreasingimportanceofmoleculardataintherapeutic decisions,accesstoanaccreditedmolecularpathologylaboratory mustbeguaranteed,althoughitmaynotbeonsite.

4.3. Radiology/imaging

Radiology/imagingplaysa criticalroleindiagnosing (includ- ing screening),staging and follow-up of CRC,and personalised treatment.Theroleoftheradiologististoperformradiologypro- cedures for screening, diagnosis, staging and follow-up of CRC usingthemostappropriateimagingtestdependingontheclini- calscenario(including cancerlocationandclinicalpresentation, i.e.,emergency,elective).

Essentialrequirements:

• Theradiologistmusthaveexpertiseingastrointestinalimaging

• Forrectalcancer,theymustknowtheadvantagesandlimitations oftransrectalultrasound andmagnetic resonance(MR) imag- inginprimary stagingand mustbeabletointegrateimaging datawithcolonoscopydata.Theymustalsoknowhowtoassess responseafterneoadjuvantrectalcancertherapy.Thisisanevolv- ingareawhereintegrationofradiologic,clinicalandendoscopic dataismandatory(Beets-Tanetal.,2013)

• Ascoloncancerstagingisbasedmainlyoncomputedtomography (CT)findings,knowledgeofstate-of-the-artCTprotocols,includ- ingCTcolonography(alsocalledvirtualcolonoscopy)(Nerietal., 2013)is required. Expertise in livercontrast-enhanced ultra- sound(CEUS)andMRimaging,withtheuseofhepato-specific contrastagents,isalsoneededasthesemethodsmaybeneces- sarytocharacteriseafocalliverlesionandtoprovideadisease balancebeforesurgery forliver metastases(vanKessel etal., 2012)

• Theradiologistmustknowwhentorefera patienttonuclear medicinefor positronemission tomography (PET)-CT. In that case,nuclearmedicinephysiciansandradiologistsmustliaiseto allowjointpatientmanagement,readingandreporting.

4.4. Surgery

TreatmentofprimarypresentationofCRCrequiressurgeryin 80–90%ofpatients.Forpatientswithmetastaticdiseaseandlocal recurrence,surgerycanalsobeanimportantpartofthetreatment.

Theroleofthesurgeonistocoordinatethesurgicalprocedureand perioperativecareandtoperformappropriatesurgeryasdecided intheMDT.Inaddition,thesurgeoncanalsobetheleadoncology specialistwhocoordinatestreatmentmodalities,mostlyinpatients whoaretreatedwithcurativeintent.

Essentialrequirements:

• SurgeonsmusthaveexpertiseinthetypeofCRCoperationsthey carryout,astherearedifferentrequirementsforsurgicaltreat- mentaccordingtothetumour.Therearenocurrentguidelines ontheminimumnumberofproceduresfor eachsurgeon,but somecountriesrecommendminimumnumberspercentre,for exampleDutchguidelinesstatethat50colonicresectionsand 20rectal resectionsperyearper institutionshouldbeamin- imumrequirementforsurgery.Locallyadvancedrectal cancer andmetastaticCRCproceduresontheliver,lungandperitoneum mustbecarriedoutincentresthathavetherequiredinfrastruc- ture,withaminimumvolumeof20surgicalproceduresforeach procedure(VanLeersumetal.,2013;SONCOS(Dutchfoundation foroncologicalcollaboration),2016;NationalInstituteforHealth andCareExcellence,2014;Areetal.,2016)

• Theremustbeatleasttwoexperiencedcolorectalsurgeonswho dedicateasignificantproportionoftheirtimetocolorectalpro- cedures,includingcancersurgery

• There must be perioperative care programmes that include anaesthesiologists,nursesanddieticians

• Anintensivecareunitmustbeavailableon-site.

4.5. Radiotherapy

Radiotherapyis oftenusedbeforesurgeryinrectalcancerto facilitatecurativeresectionwithclearmarginsandtoreducethe riskoflocalrecurrence.Itcanbeselectivelyusedaftersurgeryina smallminorityofpatientswithhighriskfactorsforlocalrecurrence whodidnotreceivepre-operativetreatment.Decision-makingis multidisciplinaryandtakesmanyfactorsintoaccount(Valentini etal.,2014;Glimeliusetal.,2013;NationalInstituteforHealthand CareExcellence,2014).Radiotherapycanalsohelpcontrolcancers inpeoplewhoarenothealthyenoughforsurgeryortoease(palli- ate)symptomsinpeoplewithadvancedcancerthathascausedan intestinalblockage,bleedingorpain.

Radiationoncologistsareresponsibleforpatients’ongoingcare and wellbeing, according to these clinicalsituations. Theyalso determineandprescribethemostsuitabledosefractionationof radiationinkeepingwithnationalandinternationalguidelines.

Essentialrequirements:

• Accesstoradiotherapymustbeprovidedinthecentreorthrough aformal,collaborativeagreement

• Theradiotherapycentremusthaveagreedprotocolsforradio- therapy and concurrent chemo-radiotherapyfor rectal cancer and clearly describe theirimage guidance policy and quality assuranceguidelines

• Accessto3DconformalRTandIMRT,whereclinicallyindicated, must be available and delivered according to clearly defined protocols. Centres must have access to stereotactic ablative radiotherapy(SABR)whereclinicallyindicatedandaccordingto agreedreferralandtreatmentguidelines

• Radiation oncologists must be responsible for follow-up and managementoflatetoxicityandsurvivorshipissues.Protocols mustbeinplaceforthemanagementoflatetoxicityincluding bowel,urinaryandsexualdysfunction.

4.6. Medicaloncology

Medicaloncologyplaysanimportantroleinthegeneralman- agementofCRCpatients−andspecificallyofCRCpatientswith advancedandmetastaticdisease(stages3and4)andinselected high-risk patientswithstage2 disease.In these situations, the medicaloncologististheleadoncologyspecialist.Theroleofthe medicaloncologististo:

• Coordinate all aspects of multimodal drug treatment, which may include coordination of clinical and molecular diagnos- tics,andindicationsetting anddistributionoftreatmentwith systemictherapies(suchaschemotherapy,monoclonalantibod- ies,signal-transductioninhibitorsand,potentiallyinthefuture, immunotherapies)andtocarryoutindicationsettingformul- timodaltreatmentanddiscusstreatmentgoalswiththepatient andotherprofessionals

• Initiateandcoordinatesymptom-relatedmanagementincoop- erationwithspecialistswhomanagetumourordisease-related symptoms(palliativeandsymptomatictreatment),andrehabil- itationandsurvivorship.

Essentialrequirements:

• Medical oncologiststreating CRC must have in-depth under- standingoftheprognosticandpredictiveclinicalandmolecular factorsthatcontributetoindicationsettingandtreatmentinten- sityanddurationofdrugtherapies.Thesefactorscompriseboth clinicalriskfactorsandmolecularfactorsandmustbeconsid- eredwithclinicalgoalsandother,non-diseaserelated factors and patientpreferences.Medical oncologyfor CRCisincreas- inglycomplex,asevidencedinthelatestclinicalguidelinesfor metastaticdisease(Labiancaetal.,2013;Glimeliusetal.,2013;

VanCutsemetal.,2016)

• Theymusthavein-depthknowledgeoftheinteractionofcancer specifictreatmentswithotherconditions(suchascomorbidities andtheirmanagement).Thisincludessupportivetreatmentfor managementofpain,gastrointestinalsymptomsandside-effects ofsystemictherapy.

4.7. Interventionalradiology

Interventionalradiologyplaysacentralroleinthetreatmentof patientswithmetastaticCRC.Theroleoftheinterventionalradiol- ogististo:

• Whenindicated,performbiopsiesonunclearhepatic,pulmonary ormusculoskeletallesions

• ParticipateintheMDTtosupportcombinedtherapiesinpatients withmetastatic disease,e.g.surgery andablationor systemic treatmentandradioembolisation(forthelatter,withthenuclear medicinephysician)

• Perform minimally-invasivetherapies according totheMDT’s decision.

Essentialrequirements:

• Theinterventionalradiologistmustdiscusstheroleandpropose useoflocalablativetechniquesfortreatingliverorlungorbone metastasesnotamenableto,orcombinedwith,surgeryorradio- therapy

• Theymust beabletoperformnotonly percutaneousthermal ablation(e.g.radiofrequency,microwave),butalsotransarterial bland or transarterial chemoembolisation (including drug- loaded particles), radioembolisation (e.g. yttrium-90 labelled particles)andcementoplasty(Gillamsetal.,2015;Tanisetal., 2012;deBaèreet al.,2015).Aminimumof100interventions ayearisrequiredfortheGermanCertificateofInterventional Radiology.

4.8. Nursing

NursingapersonwithCRCrequiresarangeofroles.Nursesuse communication,technicalandobservationskillstoconductaholis- ticassessmenttoidentifyandthenaddressphysical,psychological and social needs throughout the care pathway. They promote patientautonomyandself-managementwherepossible,through personalisedinformationandsupport.Duetotheincreasingcom- plexityofcare,thereisarequirementforhighly-specialisedcancer nursing(NationalCancer ActionTeam, 2010;MacmillanCancer Support,2011).ExtendednursingrolesforCRC(oftenknownas nursepractitioners)arenowcommoninsomecountriesandthey includeperformingendoscopy,stomacare,anddeliveringsystemic treatmentsandsurvivorshipcare,includingorganisingsurveillance onconsequencesoftreatment.

Essentialrequirements:

• Nurses working in CRC centres must have insight into each patient’sexperienceoftheirdisease,treatmentandside-effects

• Theymustprovideinformationandeducationtothepatientand familyandbethepointofcontactforthemwheretheyactascase managers

• Nursesmustactinthebestinterestofthepatientandtheirfamily tohelpcoordinatethediagnosis,treatmentandafter-careofa personwithCRC

• Theymustrepresentthepatient’spsychosocialneedsandpref- erenceswithintheMDT

• Nursesmusthelpmakereferralstootherservices,suchastoa psychologistifthereisaconcernaboutdistress.

5. DisciplinesintheexpandedMDT 5.1. Nuclearmedicine

ThereisevidencefortheefficacyofFDG-PETandFDG-PET/CTin selectedclinicalindicationsinCRCforrestaging(detectionoflocal recurrence(Maasetal.,2011),metastases(Maffioneetal.,2015), localrecurrenceormetastasesinthecaseofrisingtumourmark- erswithnegativefirst-lineimagingwithCT/MRT);andtreatment responseevaluation(assessmentofresponseofmetastasesafter chemotherapy,earlyassessmentofmetastasesduringchemother-

apy,assessmentofefficacyofneoadjuvanttherapyforadvanced rectal carcinoma, assessment of efficacyof localised minimally invasivetherapy).

Therole ofthe nuclearmedicine physicianis to overseeall aspectsofPET/CTforpatientswhorequirethisprocedure,including indications,multidisciplinaryalgorithmsandmanagementproto- cols(Boellaardetal.,2015).

Essentialrequirements:

• NuclearmedicinephysicianswithexpertiseinPETmustbeavail- abletotheMDT.In2016,mostEuropeanhospitalshaveaccess toPET/CTtechnologybutitshouldpreferablybeon-site,beless than10yearsoldandreadyforradiationtreatmentplanning,and haveintegratedPACS/RISandupdatedworkstations

• Conventionalnuclearmedicinemustalsobeavailable

• Nuclearmedicinemustbeabletoperformdailyverificationpro- tocolsandtoreactaccordingly.Quality-assuranceprotocolsmust beinplace.AnoptionforensuringthehighqualityofPET/CTscan- nersisprovidedbytheEuropeanAssociationofNuclearMedicine (EANM)throughEARLaccreditation.

5.2. Geriatriconcology

As60%ofCRCpatientsaremorethan70yearsoldand43%over 75andgiventhatolderindividualsmayrequireadaptedcareand prioritisationofhealthissues,geriatriconcologyplaysanimportant roleincare.Theroleofthegeriatriconcologististo:

• Ensurethatolderpatientsarescreenedforfrailty

• Coordinaterecommendationstootherspecialistsabouttheneed forpersonalisedtreatmentforfrailpatients.

Essentialrequirements:

• Geriatriconcologistsmustensureallolderpatientsarescreened witha simple risk-assessmentfrailtyscreening tool(Decoster et al., 2015) with whenever possible an estimation of life expectancy to allow prioritisation of medical interventions (forexamplewiththeePrognosiscolorectal screeningsurvey.

http://cancerscreening.eprognosis.org/screening)

• A ‘geriatric oncology team’ (including geriatricians and other specialists)mustbeavailableforallfrailpatientsandtheirevalu- ationdiscussedinMDTmeetingstoofferpersonalisedtreatment (Papamichaeletal.,2015)

• Geriatriconcologistsmustensuretheearlyintegrationofpal- liativecareplansor‘geriatricinterventions’,especiallyforfrail patients

• Organpreservationstrategiesforfrailrectalcancerpatientsmust bediscussedandimplementedattheMDT.Thisincludesanum- berof strategies withreduced invasivenesssuchas transanal surgicaltechniques,‘watchfulwaiting’approachafterchemora- diationorlocallyappliedendocavitycontactradiationtherapy.

5.3. Oncologypharmacy

Oncology pharmacy plays a critical role in the care of CRC patients,giventheimportanceofsystemictreatment.Theroleof theoncologypharmacististo:

• Liaise with the medical oncologist to discuss pharmaceutical treatment

• Supervisethepreparationofoncologydrugs.

Essentialrequirements:

• Oncologypharmacistsmustworkcloselywithmedicaloncolo- gists.Theymusthaveexperiencewithinteractionswithother drugs(CRCpatientsareoftenolderpeopleandsoarelikelyto havecomorbidities);experiencewithdoseadjustmentsbasedon liverandkidneyfunction;andknowledgeofcomplementaryand alternativemedicines.Oncologypharmacistsmustcomplywith theEuropeanQuapoSguidelines(EuropeanSocietyofOncology Pharmacy,2014)

• Oncology drugs must be prepared in the pharmacy and dis- pensingmusttakeplaceunderthesupervisionoftheoncology pharmacis

5.4. Psycho-oncology

About30%ofcolorectalcancerpatientssufferfromseverepsy- chosocialdistress:60%reportedmildtoseverelevelsofdepression, and52%mildtoseverelevelsofanxiety(Mehnertetal.,2014).These conditionscannegativelyaffectclinicalfactorssuchastreatment compliance,qualityoflifeandsurvival.Reducedcognitiveandsex- ualfunction,andfatigue,canbelong-termeffectsinpatientswith colorectalcancerevenyearsafterdiagnosisandtreatment,disrupt- ingpsychosocialwellbeing(El-Shamietal.,2015).

Theroleofthepsycho-oncologististo:

• Ensurethat psychosocialdistress,psychologicaldisorders and psychosocialneedsareidentifiedbyscreening,andconsidered bytheMDT

• Promote effective communication between patients, family membersandhealthcareprofessionals

• Supportpatientsandfamilymemberstocopewithmultifaceted diseaseeffects

• Evaluatepsychosocialcareprogrammes.

Essentialrequirements:

• Accesstoaself-administeredpsychologicalassessmenttool(‘dis- tressthermometer’)andpsychosocialcaremustbeguaranteedat allstagesofthediseaseanditstreatment

• Psycho-socialcareforpatientsandtheirfamiliesmustbepro- videdby psycho-oncologists to ensurecomprehensive cancer care.

5.5. Dietandnutrition

Qualifiednutritionalspecialistsarerequiredinthepre-,-peri- andpostoperativesettingsofCRC,andalsoduringadjuvanttreat- mentofadvancedCRC.Theroleofthenutritionalspecialististo preventortreatmalnutrition,improveorstabilisethenutritional state,maintainperformancestatus,supportthetolerabilityofther- apeuticmeasures,andsopositivelyinfluencethecourseofdisease (Arendsetal.,2016;Bozzettietal.,2009).

Essentialrequirements:

• Nutritionaladvicemustbegiventominimiseside-effectsafter surgerysuchasintestinaldiscomfort,lackofappetiteandriskof malnutrition

• The nutritionist must perform regular nutritional screenings, startingwiththefirstpresentationofthepatient,todetermine acompromisednutritionalstateassoonaspossible.Thescreen- ingshouldusevalidatedinstrumentssuchasNRS-2002,MUSTor SGA

• Incasesofmalnutrition,astructuredassessmentmustbeper- formedincludingassessingfoodintake,totalandleanbodymass

(e.g.byBIAanalysis),performancestatusandsystemicinflam- mation(e.g.byassessingCRPand/oralbuminlevelsinblood)

• Thenutritionistmust alsodeterminethereasonsforcompro- misedfoodintakeandtakeappropriatemeasurestocounteract them.Thisincludesenteralandparenteralnutritioninthehos- pitalandathome.

5.6. Palliativecare

MorethanonethirdoftheCRCpatientssufferfromincurable diseaseandneedpalliativecareinconjunctionwithcancertreat- mentstomanagedistressingclinicalcomplicationsandsymptoms, andimprovetheirqualityoflifeandthatoftheirfamilies(Temel etal.,2010;QuillandAbernethy,2013;Huietal.,2015).Palliative care,asdefinedbytheWorldHealthOrganization,appliesnotonly atendoflifebutthroughoutcancercare(seehttp://www.who.int/

cancer/palliative/definition/en).

Theroleofthepalliativespecialististo:

• Beresponsibleforspecialistpalliativecareandmakerecommen- dations tootherspecialistsaboutsymptomcontroland other conditions

• Identifypatientswhoneedpalliativecarethroughthesystem- aticassessmentofdistressingphysical,psychosocialandspiritual problems

• Treat disease and treatment-related symptoms such as pain, boweldysfunctionanddyspnoea,andofferpsychosocialandspir- itualcare

• Incorporatesupportforfamilymembers

• Provideearlyintegratedpalliativecareinconjunctionwithcan- cerspecifictreatments

• Provide end-of-lifecare,working withprimary carepalliative careproviders.

Essentialrequirements:

• Theremustbeapalliativecareunitwithaspecialistteamthat includespalliativecarephysiciansandspecialistnurses,working withsocial workers,chaplains,psychotherapists, physiothera- pists, occupational therapists, dieticians, pain specialists and psycho-oncologists

• AllCRCpatientswithseveresymptomsorsuffering,orpatients withmetastaticdiseaseandshortlifeexpectancy(underayear), irrespectiveofthecancer-specifictreatmentplan,mustbeintro- ducedtoaspecialistpalliativecareteam

• Toensurethecontinuityofcareathome,thepalliativecareteam mustworkwithprimarycareproviders.

5.7. Rehabilitationandsurvivorship

Survivorship, rehabilitation and supportive care are major issues forCRCpatientsand areincreasinginimportance asthe number of survivorsrises. SomeCRCsurvivors sufferfor many yearsfromongoingconditionsthatresultfromtheprimarytreat- mentoftheircancer,suchasapermanentstoma,bowelandurinary problems,andsexualdysfunction.

Late-effectsfromtreatmentsandhowpatients’livesareaffected arenotwellunderstood.Cancerrehabilitationiscrucialinhelping peopleadapttotheirconditionandmaximisefunction,indepen- denceandqualityoflife.Itiseveryprofessional’sresponsibilityto anticipaterehabilitationneedsbeforetreatmentandofferappro- priaterehabilitativecaretoprevent,restore, supportorpalliate (Stubblefieldetal.,2013;Bergetal.,2016;Scottetal.,2013).

Return-to-workremainsanimportanttopicfor manycancer patientswhentheyareidentifiedas‘cured’cases.Workisnotonly

anissuewithfinancialimplications,butcanalsohelppatientsto feelbetterpsychologically.

Essentialrequirements:

• Amultidisciplinaryteaminvolvingclinicians,nurses,psycholo- gistsandphysiotherapistsmustdiscusswithpatientshowtheir functioningwilldevelopasthetreatmentgoesandthetypesof helpavailableforthem,e.g.physicalactivity.

• Patientsandtheirfamiliesmustalsobeinformedaboutpotential treatmentlate-effectsandhowthesecanbemonitoredandtack- led,e.g.throughgoodpost-treatmentcareandregularscreening

• Rehabilitationand survivorship must be integrated into care pathwaysto ensure thebest possible care continues beyond activecurativetreatment

• Professionalsmustuseaperson-centred,goal-settingapproach, empoweringthepatientandtheircarerstotakecontroloftheir rehabilitation

• Professionalsneedtoadjusttheirpsychosocialandothersup- portivecarekeepinginmindtheproblemsfacedbyCRCcancer survivors,includingostomy/bowel problems(McMullen etal., 2016)sexualconcerns(Downingetal.,2015)andfatigue(Mota etal.,2012)

• Employersandtradeunionsmustencourage earlydiscussions aboutthepossibilitiesforemployeestoreturntoworkaftersick leave,suchaschangingjobdutiesandworkinghours

• Rehabilitationandsurvivorshipofcancermustbeintegratedinto nationalcancerplans.

5.8. Neuro-oncology

Colorectalcancercanmetastasiseintothebrain,althoughrarely.

Othertypesof CRCmetastasisrelevanttoneurology aretothe spinalcord, and alsolocalspread involvingnervoustissue (e.g.

thesacralplexus).Afrequentnervoussystemside-effectfromcer- tainCRCdrugsisperipheralneuropathy(Grisoldetal.,2012;Park etal.,2013)which isnot alwaysreversibleandlate effects are increasinglyobservedinlong-termsurvivors.Sensorysymptoms, clumsiness,ataxiaandneuropathicpainareotherdisablingsymp- toms.

Theroleoftheneurologististo:

• Adviseandguideinmetastasistothenervoussystem

• Adviseonneurotoxiceffectsofchemotherapy

• Assessandtreatneuropathies,andtakepartinpainanalysisand treatment(inseveralcountriesthesecanalsobetheresponsibil- ityofpainspecialists).

Essentialrequirements:

• Forpatientspresentingwithneurotoxiceffectsaccesstoaneu- rologistmustbeguaranteed,notnecessarilyonsite

• Neurologistsmustassessneurologicsymptomsandtreatment effectsinCRCpatients,withafocusontoxicityandchanges/side- effects on the central nervous system (CNS) and peripheral nervoussystem.Theuseof simple composite scoresforneu- ropathiesisrecommended.

6. Otheressentialrequirements

6.1. Patientinvolvement,accesstoinformationandtransparency

• Patientsmustbeinvolvedineverystepofthedecision-making process. Their satisfaction with their care must be assessed throughoutpatientcarepathways.Itisalsoessentialthatpatient supportorganisationsareinvolvedwheneverrelevant.Patients

mustbeofferedinformationtohelpthemunderstandthetreat- mentprocessfromthepointofdiagnosis.Theymustbesupported andencouragedtoengagewiththeirhealthteamtoaskquestions andobtainfeedbackontheirtreatmentwhereverpossible.

• Conclusionsoneachcasediscussionmustbemadeavailableto patientsandtheirprimarycarephysician.Adviceonseekingsec- ondopinionsmustbesupported.

• Cancerhealthcareprovidersmustpublishonawebsite,ormake availabletopatientsonrequest,dataoncentre/unitperformance, including:

Informationservicestheyoffer

Waitingtimestofirstappointment

Pathwaysofcancercare

Numbersofpatientsandtreatmentsatthecentre

Clinicaloutcomes

Patientexperiencemeasurements

Incidents/adverseevents.

6.2. Auditing,performancemeasurement,qualityassuranceand accreditation

• TheexpandedMDTmustmeetatleastonceayeartoreviewthe activityofthepreviousyear,discusschanges inprotocolsand procedures,andimprovetheperformanceoftheunit/centre.

• ToproperlyassessqualityofCRCcare,threecategoriesofout- comesmustbemeasuredandcollectedinadatabaseatthelevel oftheCRCcentre,andregionallyand/ornationally:

Clinicaloutcomes

Processoutcomes

Patient-reportedoutcomes(PROs).

Datameasuredandcollectedvariesfromonecountrytoanother butitisrecommendedthatthefollowingoutcomedataaresystem- aticallymeasuredandcollected(seealso‘Furtherqualityandaudit resources’,below):

• 5-yearoverallsurvivalrate

• Complications

• %ofpreoperativepatientsdiscussedintheMDT

• %ofpostoperativepatientsdiscussedintheMDT.

Theexpertgroupalsorecommendsthatcentresdevelopperfor- mancemeasurementmetricsbasedontheessentialrequirements inthispaper.

• TheECCOexpertgroupalsorecommendsthatfurtherattention mustbegiventopatientreportedoutcomemeasures(PROMs), tonotonlyagreeonwhichtoolsshouldbeused,butalsotouse PROsmoresystematicallyaspartofdiscussionsandevaluation withintheMDT.

Toensureappropriate,timelyandhigh-qualitycare,aquality managementsystem(QMS)mustbeinplace.Itmustinvolveclini- calcare,strategicplanning,humanresourcemanagement,training etc. TheQMS must be accountableat an institutional manage- mentlevelandbasedonwrittenandagreeddocumentationsuch asguidelines,protocols,patientpathways,structuredreferralsys- tems,andstandardoperatingprocedures(SOPs).

TheQMSmustensurecontinuityofcareforpatients,involve- mentofpatientsincancercarepathways,andreportingofpatient outcomes and experience. As part of a QMS, an effective data management and reporting system, and an internal audit sys- tem,arenecessities.Whereavailable,externalnationalauditand certificationsystemsaretobefollowed.TheECCOexpertgroup alsostronglyrecommendsparticipationininternationalaccredita- tionprogrammes(e.g.OrganisationofEuropeanCancerInstitutes

(OECI)accreditation:seehttp://oeci.selfassessment.nu/cms)(Wind etal.,2016).

AtEuropeanlevel,aconsortiumofcancersocieties,including ECCO, have started a quality improvement programme, Euro- peanRegistrationofCancerCare(EURECCA),which hasinitially focusedoncolorectalcancer.Apaperfrom2014(Breugometal., 2014)notesthatauditshavemostcommonlyfocusedonsurgery, and onrectal surgeryin particular,owingto pooroutcomesin the1990s. Severalcountryaudit programmesare mentioned – thelongeststandingistheNorwegianColorectalCancerProject, which began in 1993. EURECCA has been identifying a core dataset for audit registries, and held a consensus meeting to drawup CRC multidisciplinary guidelines (van de Velde et al., 2014).

ItisnotedthatqualityassuranceishighinclinicaltrialsofCRC, suchaswhenresearchwascarriedoutoncombiningradiotherapy withtotalmesorectalexcision(TME)surgeryinrectalcancer,and indeedqualityassuranceismostadvancedinsurgerygenerally.

TheEURECCA2014papernotesthatpatientstreatedintrialshave betteroutcomes,anddiscusseshowqualityassuranceisdevelop- inginotherdisciplinessuchasradiationoncology,pathologyand medicaloncology−inthelatter,somestudieshaveindicatedthat abouthalfof patientshavereceivednon-evidencebasedsched- ules.

Andnotleast,qualityassuranceappliestothemanagementof MDTsandalsotodemonstratingcost-effectivesofqualityimprove- ments.

6.2.1. Furtherqualityandauditresources

• The National Bowel Cancer Audit in England and Wales (HealthcareQualityImprovementPartnership,2015)reportson carepathways, referralsources,how patientsaretreated,the outcomesofsurgeryandsurvival,andwillincludelinkagesto chemotherapy,radiotherapyandpalliativecaredatabases.Ituses qualitystandardsfrombothNICEandtheAssociationofColo- proctologyofGreatBritainandIreland.

• Germanyhasavoluntarycertificationsystemforcancerinstitu- tionsincludingthosethatqualifyasamultidisciplinarybowel cancercentre.Thissystemcurrentlycoversabouthalfofcolon cancersandthemajorityofrectalcancerstreatedinGermany.

ThecertificationguidelineforCRChas197qualitativeandquan- titative requirements, such as minimum surgery volumes,as discussedina paperthat concludesthatcertification leadsto a better concentration of treatment-related issues (Jannasch etal.,2015).Thereareregularbenchmarkreports(Wesselman etal.,2014)ontheperformanceofthesecentresonallitems auditedannually,andqualityindicatorsareregularlyreported andupdated.Anotherrequirementforcertificationisthat5%of CRCpatientsareincludedinclinicaltrials.

• The Dutch Surgical Colorectal Audit in hospitals in the Netherlandsincreasedguidelinecompliancefordiagnostics,pre- operativemultidisciplinarymeetingsandstandardisedreporting, whilecomplication,re-interventionandpostoperativemortality ratesdecreasedsignificantly(VanLeersumetal.,2013).

• Astudythatdevelopedevidence-basedqualityindicatorsforCRC inapopulationsettingwaspublishedbyaSwissgroupin2013 (Bianchietal.,2013).Animportantmessageisthatolderpeople mustbeincluded.

• AsystematicreviewoftheliteratureonpatternsofCRCcarein Europe,AustraliaandNewZealandfoundthereislesstreatment forolderpeopleand forthelesswell-off,althoughwidevari- abilityindatacollection,healthsystemsandpopulationsmade comparisonschallenging(Chawlaetal.,2013).

6.3. Cancereducationandtraining

ItisessentialthateachCRCcentreprovidesprofessionalclin- icalandscientificeducationonthediseaseandthatatleastone personisresponsibleforthisprogramme.Healthcareprofessionals workinginCRCmustalsoreceivetraininginpsychosocialoncology, palliativecare,rehabilitationandcommunicationskills.Suchtrain- ingmustalsobeincorporatedintopostgraduateandundergraduate curriculumsforphysicians,nursesandotherprofessionals.

6.4. Clinicalresearch

CentrestreatingCRCmusthaveclinicalresearchprogrammes (eithertheirownresearchorasaparticipantinprogrammesled byothercentres).Theresearchportfolioshouldhavebothinter- ventionalandnon-interventionalprojectsandincludeacademic research.

TheMDT must assess allnewpatientsfor eligibility totake partin clinicaltrialsat thecentreor in researchnetworks.For CRC,centresshouldhaveatleast10%ofallpatientsincludedin theirresearchprojectsorinresearchperformedinothercentres.

Researchersatothercentresshouldbeconsideredaspartofthe expandedMDTforatleastannualdiscussionofclinicaltrialpar- ticipation.Recentresearchdemonstratesthat institutionsactive inresearchachievebetteroutcomesfortheentirepatientgroup ratherthanjusttheresearchparticipants(Downingetal.,2016).

Older adults are currently underrepresented in cancerclin- ical trials despite having a disproportionate burden of disease (Ka ´zmierska,2013).Strategiestoincreasetheparticipationofolder adultsinclinicaltrialsmustbeimplementedandtrialsdesignedto takeintoaccounttheirneeds.

7. Conclusion

Takentogether,theinformation presentedinthispaperpro- videsacomprehensivedescriptionoftheessentialrequirements forestablishingahigh-qualityCRCservice.TheECCOexpertgroup isawarethatitisnotpossibletoproposea‘onesizefitsall’system forallcountries,buturgesthataccesstomultidisciplinaryunitsor centresmustbeguaranteedforallthosewithCRC.

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