ANNUALREPORT2017

TheNorwegianRenalRegistry

(NorskNyreregister)

________________________________________________________________________Thisreportwillalsobeavailableon:http://www.nephro.no/registry.htmlRegistryChairperson:AnnaV.Reisæter(areisate@ous-hf.no)DirectorofRegistry:AndersÅsberg(aaasbe@ous-hf.no)Adress:NorskNyreregister,ATX-Nyreseksjonen,OUSRikshospitalet,Pb.4950Nydalen,

0424Oslo,Norway.

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HistoryandOrganisationofNorwegianRenalRegistry(NRR)TheNorwegianRenalRegistryisanepidemiologyqualityregistryforpatientswithsevererenaldisease.Inclusionintheregistryisbasedonwritteninformedconsentandpatientsarefollowedfortheirentirelifecourse.Patientsinwhomadiagnostickidneybiopsyisobtainedorwhohavedevelopedchronickidneydiseasestadium5(CKD5)areincludedintheregistry.Acutekidneyfailurepatientsarenotincludedintheregistryunlesstheydevelopchronickidneyfailure.ThecurrentversionofNRRisamergeoftheNorwegianNephrologyRegistryandtheNorwegianRenalBiopsyRegistryin2016andconsistsoftwosections;Sectionfordialysisandtransplantation(atOsloUniversityHospital)andSectionofkidneybiopsy(atHaukelandUniversityHospital).InthemergeallhistoricdatafromtheNorwegianNephrologyRegistrywascontinued,whilehistoricdatafromtheNorwegianRenalBiopsyRegistrywasnoteligiblefortransferintothenewregistry.Thehistoricbiopsydataishoweverstillavailableforanalyses.TheNorwegianNephrologyRegistrywasformallyconstitutedin1994asacollaborationbetweenTheNorwegianRenalAssociation(NorskNyremedisinskForening)andOsloUniversityHospital-Rikshospitalet,withthelatterastheformalowner.Nationaldataonrenalreplacementtherapy(RRT)hadbeencollectedwithinTheRenalAssociationsince1980inalessformalisedmanner,andthetransplantcentrehadstoreddataontransplantedpatientssincethelatesixties.Further,NorwegianrenalunitshadreportedtotheERA-EDTA-registrysincethelatesixties.Sincethemid-90ies,aprocessoftransitionfromapureepidemiologicalregistryintoaquality-orientedregistryhasprogressed.

NorwegianRenalBiopsyRegistrywasestablishedin1988.IthasbeenrunbytheRenalunitatHaukelandUniversityHospital.Both,nephrologistsandpathologistscontributedwithdatarelatedtonon-neoplastickidneybiopsies.Theaimoftheregistrywas,firstofall,toprovideaplatformfordevelopmentofexpertiseandimprovementofquality,secondtohaveamaterialavailableforresearch.In2012,theregistrywasacknowledgedanationalqualityregistry.From2012,theregistryhasbeenbuildingadigitalslidearchiveofkidneybiopsies.In2015,theregistryhadcollectedclinicalandpathologicaldataof13000non-neoplastickidneybiopsies.

NationalorganisationandpolicyNorwayhad5.278mill.inhabitants(July2017)and19countieswithpopulationsrangingfrom76,228to669,060inhabitants.Eachcountyhasacentralrenalunitandsomehavetwo,furthersomehavesatelliteunitsruninclosecontactwiththecentralunit.Thereisonlyonetransplantcentre(twoduring1963-82).Pre-transplantwork-up,aswellaspost-transplantfollow-upbeyond3months,ishandledbythecounty-centres.CountyboardersdoesnotalwayscoincidewiththeareathatthedifferentrenalunitscoverandthisreportpresentdatabasedoncountyboardersaswellasdividedinRHFandHFlevels,wheneverappropriate.

During2017FinnmarkwasseparatedfromTromsø,sonowthereare26centersresponsibleforreportingdatatoNRR,andtheyalldo.EachcenterisresponsibletoreportallpatientsfromwhomadiagnostickidneybiopsyistakenandallpatientsestablishedinCKD5onacontinuousbasis(eGFR<15ml/min/1.73m2formorethan2months.Progressiontoneedofrenalreplacementtherapy(dialysis,transplantation),changesbetweendialysismodality(PD,centerHD,“homeHD”),transferbetweencentersorimmigration/emigration,graftlossanddeathsisreportedonacontinuouslybasis.During2017,datafromthelastvisitbeforeDecember31st2017wastobereportedforallCKD5patients,eitheriftheywerenottreated

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withrenalreplacementtherapyoriftheyreceiveddialysisorhadafunctioningrenalgraft.Theoverallreportratebythefinalizationofthisreportwas97.2%.

Transplantationhasalwaysbeenconsideredtherenalreplacementtreatmentofchoice,ifpossible,withalivingrelateddonor.Since1984,alsounrelateddonorshavebeenused.Acceptancecriteriafortransplantationhavebeenwide,strictagelimitshavenotbeenapplied.Overtime,anincreasingnumberofnon-transplantablepatientshavealsobeenofferedlife-longdialysis.Individualcoverageoftheregistryfortheentirecohortisestimatedtobeatleast95%.TransplantedpatientsarecrosscheckedcontinuouslyagainstthetransplantationlistsatOUS-Rikshospitaletandannualcrosschecksagainsteachofthe26centerslistsofdialysispatientsareperformedperDecember31steachyear.Forpatientsinrenalreplacementtherapytheindividualcoverageiscloseto100%(5alivewithoutconsentin2017).CKD5patientsnottreatedwithrenalreplacementtherapyhaveonlybeenincludedintheregistrysince2016andthecoverageisstillsuboptimal.Basedonprevalencedatafromtheliteratureaconservativeestimateofcoverageofthisgroupisatleast58%.Acoverageanalysisofnon-neoplastickidneybiopsieshasbeenperformedin2014and2015.Thecoveragewasdroppingfrom89%in2014to71%in2015becauseofachangeinthereportingprocedure.Atregularintervals,reportingofdeathstotheregistryischeckedagainsttheNorwegianNationalRegistry(NO:Folkeregisteret).NRRisoneof53nationalmedicinequalityregistriesandinclude22qualityindicatorsthatarereportedannually(https://www.kvalitetsregistre.no/registers/norsk-nyreregister).Thesedataareinadditionincludedinthepresentreport.Alistofallqualityindicatorscanbefoundhere:http://www.nephro.no/nnr.html.

Incidencedata2017During2017adiagnostickidneybiopsywasperformedin545patients,289werereportedasnewpatientsestablishedinCKD5and579patientsstartedrenalreplacementtherapy(i.e.100.0permill.inhabitants).

Biopsy

Numberofkindeybiopsiesperregionalhealthauthority 2015 2016 2017 South-Eastern Norway Regional Health Authority 320 297 305 Western Norway Regional Health Authority 172 126 134 Central Norway Regional Health Authority 64 62 54 Northern Norway Regional Health Authority 40 47 52

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Numberofkidneybiopsiesperhospitalin2017

Thisfigureshowsthenumberofkidneybiopsiesperformedperhospitalin2017.Hospitalswhichperformedlessthan10kidneybiopsiesin2017areexcludedfromtheanalysis.

Averageageatkidneybiopsyin2017perRegionalHealthAuthority South-Eastern

Norway N=305 Western

Norway N=134 Central

Norway N=54 Northern

Norway N=52 Totalt N=545

Mean age (±SD) 52.2 ± 20.2 51.7 ± 17.4 54.0 ±18.7 52.4 ± 19.6 52.3 ± 19.3 Thenationalmeanageatkidneybiopsyin2017was52.2(±19.3)years,unchangedfrom2016.ThemaximumdifferenceinmeanageatkidneybiopsybetweentheNorwegianhealthregionswas7.7yearsin2016,whereasthedifferenceinmeanagein2017was2.3years.ThelowestmeanageatkidneybiopsywasreportedinWesternNorway,whereasthehighestmeanageatkidneybiopsywasreportedinCentralNorway,unchangedfrom2016.In2017,5.5%ofallreportednativekidneybiopsieswereperformedinindividualsaged17yearsoldoryounger.93%ofkidneybiopsiesperformedinindividualsyoungerthan18yearsoldwereperformedatauniversityhospital;OsloUniversityHospitalRikshospitalet76.7%,HaukelandUniversityHospital6.7%,OsloUniversityHospitalUllevål3.3%.VestreVikenBærumhospitalperformed3.3%ofallkidneybiopsiesinpatientsyoungerthan18yearsold,asdidÅlesundhospital.

In20172.9%ofallkidneybiopsieswereperformedinpatientsabove80yearsofage,mostoctogenarianswerebiopsiedinhospitalslocatedintheSouth-EasternRegionalHealthAuthority.

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Averageageatkidneybiopsyperhospitalin2017

Reportedclinicalindicationsforkidneybiopsy,number(%)ofkidneybiopsiesintheRegionalHealthAuthorities

South-Eastern

Norway N(%)

Western Norway

N(%)

Central Norway

N(%)

Northern Norway

N(%)

Total N(%)

Nephrotic syndrom 38 (12.5 %) 35 (26.1 %) 7 (13.0 %) 11 (21.2 %) 91 (16.7 %) Nephritic syndrom 39 (12.8 %) 28 (20.9 %) 15 (27.8 %) 10 (19.2 %) 92 (16.9 %) Acute kidney failure 75 (24.6 %) 27 (20.1 %) 13 (24.1 %) 15 (28.8 %) 130 (23.9 %) Chronic kidney failure 106 (34.8 %) 31 (23.1 %) 17 (31.5 %) 12 (23.1 %) 166 (30.5 %) Proteinuria 155 (50.8 %) 75 (56.0 %) 26 (48.1 %) 32 (61.5 %) 288 (52.8 %) Haematuria 90 (29.5 %) 56 (41.8 %) 30 (55.6 %) 25 (48.1 %) 201 (36.9 %) Other 12 (3.9 %) 6 (4.5 %) 2 (3.7 %) 1 (1.9 %) 21 (3.9 %) Itispossibletoreportmorethanoneclinicalindicationforkidneybiopsy.Asaresultthetotalnumberofclincialindicationmayexceedthetotalnumberofkidneybiopsiesperformedin2017.Someregionaldifferencesinclinicalindicationforbiopsyareapparent,nephroticsyndromeismorefrequentlyreportedbyhospitalsintheWesternandNorthernRegionalHealthAuthoritiesascomparedtotherestofNorway.Thesametrendwasobservedin2016.

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Urinalbumintocreatinineratioandproteintokreatinineratio(mg/mmolcreatinine)atthetimeofkidneybiopsyinthedifferentRegionalHealthAuthorities

Diabetesmellitusanddiabeticnephropathy

Diabetesmellitus(type1or2)ismorefrequentlyreportedbyhospitalsintheCentralandNorthernRegionalHealthAuthorities,ascomparedtohospitalsintheotherpartsofNorway.Eventhoughabout25%ofpatientswerereportedtohavediabetesmellitus(type1or2)byhospitalsintheCentralRegionalHealthAuthority,lessthan5%ofthesepatientswerediagnosedwithdiabeticnephropathy.

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QualityindicatorsfordivisionofkidneybiopsyPatientgroup Qualityindicator Indicatior Whatdoesitindicate?

Kidneybiopsy Percentageofserious

Complications

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Percentofkidneybiopsieswith10ormoreglomeruliinparaffinembeddedmaterial,perhospital

Thisfigureshowsthenumberofglomeruliinparaffinembeddedmaterialpreparedforlightmicroscopy.Onlyhospitalswhichperformed10ormorekidneybiopsiesareincludedintheanalysis.Analternativeassessmentofthenumberofglomeruliistheinclusionofallmaterialfromakidneybiopsy,takinginalsomaterialpreparedforelectronmicroscopyandimmunofluourescence.Ifapplyingthisassessmentmethod,stillonly5ofthe19hospitalsachieved10ormoreglomeruliperbiopsyin90%ofcases.

Percentofkidneybiopsieswith10ormoreglomeruliinallavailablematerial,perhospital

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Thisfigureshowsthenumberofavailableglomeruliinparaffinembeddedmaterial,EPONembeddedmaterialforelectronmicroscopyandfrozenmaterialpreparedforimmunofluorescence.Onlyhospitalswith10ormorekidneybiopsiesareincludedintheanalysis.Inordertosecureenoughmaterialforadequatediagnosticevaluation,morethanonetissuecylinderperproceduremayberequired.

Numberofkidneybiopsieswith≥10glomeruliandnumberofpasseswiththebiopsyneedle

Thisfigureshowsthenumberofkidneybiopsieswith≥10glomeruliperhospital,andhowmanypasseswiththebiopsyneedleweremadeinordertoobtainsufficientmaterialinthe328biopsieswithreporteddataonnumberofpasseswiththebiopsyneedleandnumberofglomeruliinthesample.

ProportionofkidneybiopsieswithmoderatetoseverechronicchangesChronicchangesintherenaltissuearepersistentandirreversible.Ahighproportionofchronicchangesinthebiopsymayindicateafutureriskoflossofkidneyfunction,andlowpotentialforstabilisationorrecoveryofkidneyfunctionwithmedicalintervention.Itisimportanttodiagnosekidneydiseaseearlyoninthediseaseprocess,beforethediseasemanifestationsresultinchronic,irreversiblechanges.Bothtubularatrophyandglomerulosclerosisaregoodmarkesofchronicchangesinthekidneys.

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Primarykidneybiopsies(%)withmoderatetoseveretubularatrophy

Tubularatrophyisaformofirreversiblechangewithinthekidney.Onlyhospitalswhichperformed10ormorekidneybiopsiesin2017areincludedintheanalysis.Thegraphshowsawidevariationofproportionofbiopsieswithmoderatetoseverechronicchangesbetweenhospitals.Furtherinvestigationisneededtoelucidatethereasonforthisvariation.

Correlationbetweenglobalglomerulosclerosis(%)andmoderatetoseveretubularatrophy(%)perhospital

Theanalysisincludesonlyprimarykidneybiopsies,re-biopsiesareexcludedfromtheanalysis.Thefigureshowsthattubularatrophymightbeamoresensitiveparametertoevaluateatrophicchangesascomparedtoglobalglomerulosclerosis.Manykidneybiopsiesshowagreaterdegreeoftubularatrophythanglomerulosclerosis.

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Serumcreatinine(6groups)atkidneybiopsy,perRegionalHealthAuthority

Serumcreatinineincreasesaskidneyfunctiondeclines.Thediseaseprocessbywhichkidneyfunctionislosthasoftenstartedsometimepriortotheincreaseinserumcreatinine.Inperformingakidneybiopsyinatimelyfashion,priortodevelopmentofmoderatetoseverechronicchanges,moretherapeuticgainsmaybemadebythepatientsandtreatingnephrologists.Serumcreatinineisreportedatthetimeofkidneybiopsy,theregistryisplanningoncollectingfollow-updataforselectgroupsofpatientsinthefuture.

Asin2016,mostkidneybiopsiesareperformedinpatientsaged18yearsorabovewhenserumcreatinineexceedes200µmol/L.Thenumberofreportedkidneybiopsiesfallasserumcreatinineexceeds300µmol/L.Morekidneybiopsiesperformedinpatientswiths-creatinine>400µmol/LwerereportedbythehospitalsintheSouth-EasternRegionalHealthAuthority(10.4%)ascomparedto5.9-7.9%intheotherRegionalHealthAuthorities.

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Means-creatinineµmol/Latkidneybiopsy,perhospital

Theuniversityhospitalsperformedthemajorityofthekidneybiopsiesinthepaediatricagerangein2017,andthelowermeans-creatininereportedfromthesecentersislikelyreflectthelowermusclemassinthepaediatricagegroup.

Seriousprocedurerelatedcomplications;bloodtransfusionand/orintervention 2015 2016 2017 No complications 74 % 82.9 % 78.3 % Missing data 16.9 % 9.1 % 13.0 %

Reportedcomplicationsin2017perRegionalHealthAuthority South-Eastern

Norway N(%) Western

Norway N(%) Central

Norway N(%) Northern

Norway N(%) Total N(%)

None 241 (79 %) 107 (79.9 %) 39 (72.2 %) 40 (76.9 %) 427 (78.3 %) Transfusion 5 (1.6 %) 3 (2.2 %) 2 (3.7 %) 0 (0 %) 10 (1.8 %) Intervention 1 (0.3 %) 0 (0 %) 0 (0 %) 0 (0 %) 1 (0.2 %) Other 19 (6.2 %) 5 (3.7 %) 3 (5.6 %) 2 (3.8 %) 29 (5.3 %) Haematuria 11 (3.6 %) 1 (0.7 %) 3 (5.6 %) 0 (0 %) 15 (2.8 %) Missing data 34 (11.1 %) 20 (14.9 %) 7 (13.0 %) 10 (19.2 %) 71 (13.0 %) Itispossibletoreportmorethanonecomplicationperprocedure.Totalnumberofkidneybiopsiesperformedin2017withavailableclinicaldatan=545.Elevenseriouscomplicationswerereportedin545kidneybiopsiesin2017(2,0%).Themedianageforpatientswhoexperiencedseriouscomplicationswas62.9(28-82)years.

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Seriousadverseeventswerereportedfor6malesand5females,medianserumcreatinineatwas288µmol/L(range31-756).Noobviousrelationtothenumberofpasseswiththebiopsyneedlewasfound,45.5%ofthebiopsieswereperformedwith1-2passes,27.3%wereperformedwith3-4passesandthenumberofpasseswiththebiopsyneedlewasnotreportedin18.2%ofthecases.Furthermore,nosinglediagnosiswasassociatedwithahigherriskofprocedurerelatedadverseevents,7differentclinicaldiagnoseswerereported.Asthenumberofseriousadverseeventsislow,smallchangesinabsolutenumbersmayresultinlargechangesinthepercentageofbiopsyrelatedcomplicationsfromyeartoyear.Dataaccumulatedoverafive-yearperiodwilllikelygiveamoreaccuraterepresentationoftheriskofseriousadverseeventsrelatedtokidneybiopsy.AsdatafromtheNorwegianKidneyBiopsyRegistrycannotbeincorporatedintothenewdivisionofKidneyBiopsy,reportingonfive-yeardataisnotyetpossible.

ProportionofkidneybiopsiessignedoffbythedepartmentofpathologywithinonemonthThetimeintervalfromakidneybiopsyisregistrerdwiththepathologydepartmentuntilthenephropathologisthassignedoffthefinalreportincludingtheelectronmicroscopicinvestigationisaqualityindicator,astheclinicianwillbasetreatmentchoicesonthefinalpathologydiagnosis.Delaysinreportingonthekidneybiopsymaycausedelayintreatmentofthekidneydisease,andconsequentlyimpactpatientoutcomesnegatively.Theelectronmicroscopyexaminationinparticularistime-consuming,andakidneybiopsyisthereforeoftenreportedoninstages.Kidneybiopsiesfromseverelyillpatientsareusuallyreportedonbythepathologisttotheclinicianbytelephoneassoonasthebiopsyispreparedforlightmicroscopy.Thisoralreportisfollowedbyapreliminarywrittenreport,whichmayormaynotincludeimmunohistochemistry.Thefinalpathologyreportissignedoffafterelectronmicroscopy.

Percentageofkidneybiopsiesreportedonwithin1month(21workdays)in2017

0

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% be

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HUS

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Tromsø

1 måned (virkedager)

80%

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Averagetimetofinalpatologyreport,bydepartmentofpathology,since2014

Only2pathologydepartmentsmetthequalitystandardofafinaldiagnosticreportwithin1month.Overtheyearstherehasbeenaslightlypositiveoveralltrendtowardsshorterreportingtime.

ProcedurerelatedparametersAsin2016,kidneybiopsiesaremainlyperformedbyradiologist,withtheexceptionofhospitalswithintheWesternRegionalHealthAuthority.Somecentershaveanephrologistassessthetissuecylinderinthestereomicroscopetoensureadequatequalitybeforethebiopsyistransportedtothedepartmentofpathology.Thekidneybiopsyismorelikelytobeperformedasanin-hospitalprocedure,somecentersintheWesternRegionalHealthAuthorityregularlyperformkidneybiopsiesasanout-patientprocedure.Morethanonethirdofkidneybiopsiesarereportedtotheregistrywithoutsufficientinformationastolevelofcareatthetimeofbiopsy.

South-

Eastern Norway N

(%)

Western Norway N (%)

Central Norway N (%)

Northern Norway N (%)

Total N (%)

Biopsy performed by

Nephrologist 8 (2.6 %) 91 (67.9 %) 1 (1.9 %) 2 (3.8 %) 102 (18.7 %) Radiologist 276 (90.5 %) 34 (25.4 %) 46 (85.2 %) 45 (86.5 %) 401 (73.6 %) Both 1 (0.3 %) 0 (0 %) 2 (3.7 %) 2 (3.8 %) 5 (0.9 %) Unknown 20 (6.6 %) 9 (6.7 %) 5 (9.3 %) 3 (5.8 %) 37 (6.8 %) Biopsy needle 14G 1 (0.3 %) 0 (0 %) 2 (3.7 %) 1 (1.9 %) 4 (0.7 %) 16G 28 (9.2 %) 111 (82.8 %) 38 (70.4 %) 21 (40.4 %) 198 (36.3 %) 18G 221 (72.5 %) 18 (13.4 %) 4 (7.4 %) 19 (36.5 %) 262 (48.1 %) Unknown 55 (18 %) 5 (3.7 %) 10 (18.5 %) 11 (21.2 %) 81 (14.9 %) No. of passes 1 33 (10.8 %) 33 (24.6 %) 2 (3.7 %) 1 (1.9 %) 69 (12.7 %) 2 131 (43.0 %) 66 (49.3 %) 25 (46.3 %) 19 (36.5 %) 241 (44.2 %)

0

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Gje

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Alle RH HUS St. Olavs Tromsø

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3 72 (23.6 %) 17 (12.7 %) 13 (24.1 %) 13 (25.0 %) 115 (21.1 %) 4 or more 34 (11.1 %) 8 (6.0 %) 8 (14.8 %) 13 (25.0 %) 63 (11.6 %) Unknown 35 (11.5 %) 10 (7.5 %) 6 (11.1 %) 6 (11.5 %) 57 (10.5 %) Level of care Out-patient 4 (1.3 %) 19 (14.2 %) 3 (5.6 %) 1 (1.9 %) 27 (5.0 %) In-patient 213 (69.8 %) 52 (38.8 %) 32 (59.3 %) 33 (63.5 %) 330 (60,6 %) Unknown 88 (28.9 %) 63 (47.0 %) 19 (35.2 %) 18 (34.6 %) 188 (34,5 %)

OxfordclassificationofIgAnephropathyTheOxfordclassificationofIgAnephropathy,thesocalledMESTscore,wasintroducedin2009.Fourmorphologicfeaturesofprognosticandpartlypredictivevaluearescored:

• Mesangialhypercellularity(M)• Endocapillaryhypercellularity(E)• Segmentalsclerosis(S)• Tubularatrophy(T)

Crescents(C)wereaddedtothemodelin2016.

The scoring model is of value in the clinical setting, and Norwegian pathologists havetherefore started scoring IgA nephropathies according to this model. The registry hasinvestigated to which degree pathology departments have implemented the Oxfordclassification of IgA nephropathy. In 2017, three of six pathology departments haveimplementedthescoringsystemtovaryingdegrees.Totalnumberofkidneybiopsiesandnumberof IgAnephropathieswithOxfordclassification,perpathologydepartment

Pathology department No. of kidney

biopsies

No. of IgA nephropathies

% IgA nephropathy

No. of biopisies

with Oxford classification

% IgA biopsies

with Oxford classification

Rikshospitalet 224 35 16 31 89 Haukeland universitetssjukehus

200 49 25 31 63

Førde sjukehus 17 1 6 0 0 Ålesund sjukehus 8 2 25 0 0 St. Olavs Hospital 40 4 10 0 0 UNN Tromsø 34 6 18 4 67 Total 523 97 19 66 68 Thetotalnumberofkidneybiopsiesisbasedonreportedpathologyforms(N=523).TheOxfordclassificationgivesinformationonhow«active»anIgAnephropathyis.ThehighertheM(mesangialhypercellularity)andE(endocapillaryhypercellularity)scoresare,themoreactivethediseaseprocessis.Segmentalsclerosis(S)andtubularatrophy(T)scoresgiveinformationonchronic,irreversiblechanges.

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OxfordClassificationMESTscorein2017

RH:OsloUniversityHospital,Rikshospitalet.HUS:HaukelandUniversityHospital.UNN:TromsøUniversityHospital.ThetableaboveshowstheMESTscoresfromthedifferentpathologydepartments.Manyofthebiopsiesshowchronicchanges(S1,T1-2),andthechronicchangesareoftenpronounced(T2).Activechanges(M1,E1)arelessfrequent.Thereissomevariabilitybetweenthedifferentpathologydepartments.Therearedifferentexplanationsforthisvariability.ItmightsimplybeduetosmallnumbersofIgAnephropathiesscoredwiththeMESTscore.Overtime,thenumberswillincreaseandresultsbecomemorereliable.OtherexplanationscouldbeactualdifferencesintheseverityofIgAnephritisorlocaldifferencesinhowtheMESTscoreisapplied.

CKD5notinRRTTheageandsexdistributionofCKD5patientsnottreatedwithRRTisasexpectedinrelationtotheRRTpopulationthathasbeenfollowedinNorwayformanyyears.Amajorityofpatientsweremale(65.7%)andmedianageattimeofenteringCKD5stagewas69.6years(mean66.3years),rangingfrom0.8to92.4years.Patientshadbeenknowatthenephrologyunitin90%ofthecasesandatotalof84%wereconsideredasRRTcandidatesand7%weredefinitelynotcandidatesforRRTtreatment(9%unsurestatus).ThemainreasonfornotbeingRRTcandidatewascomorbidity,followedbypatient/familywhishnottostartRRT.Hypertensionwasthemaincauseofrenalfailurewith37%ofthepatientshavingthisastheirmaindiagnosis.Diabeteswastheprimarydiagnosisin19%ofthepatients,includingdiabetesascomorbidityatotalof34%patientswasdiabetic(90%TypeIIdiabetesmellitus).MediantimewithadiabetesdiagnosisbeforeenteringtheCKD5stagewas19years.

Proteinuria(ACR>3and/orPCR>15)waspresentin89%ofthepatientsattimeofenteringCKD5.

Category M E S T

Score 0 1 0 1 0 1 2 0 1 2

% all 58 42 74 26 32 68 0 62 26 12

RH 58 42 90 10 48 52 0 58 19 23

HUS 58 42 61 39 19 81 0 74 26 0

UNN 50 50 50 50 0 100 0 0 75 25

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StatusatstartofCKD5(withoutRRT) Total

(n:289)

Creatinine(mean)[µmol/L] 395Albumin(mean)[g/L] 38Haemoglobin(mean)[g/dL] 11.4Haemoglobin-%2antihypertensivedrugs

53%

CKD5inRRT(DialysisorTransplantation)Amajorityofthepatientsweremale(67.1%)andmedianageatstartofRRTwas67.0yearsmean63.5years),rangingfrom1.0to94.8years.AttimeofstartofRRT63%wereassessedbythetreatingphysiciantobeaTx-candidate.Ofthepatientsstartinghaemodialysisandthathadbeenknowatthetreatingcenterforatleast4months39%starteddialysisusinganAV-fistulaasbloodaccess.

StatusatstartofRRT Total

(n:579)

HD

(n:360)

PD

(n:146)

Preempt.Tx

(n:73)Creatinine(mean)[µmol/L] 622 645 630 490Albumin(mean)[g/L] 36 34 37 42Haemoglobin(mean)[g/dL] 10.3 9.9 10.7 11.1Haemoglobin-%2antihypertensivedrugs

50% 51% 54% 41%

Asmightbeanticipated,pre-emptivelytransplantedpatientshadasomewhatlowerserumcreatinine,thushigherGFR,andahigherhaemoglobinandalbuminthanthosestartingdialysis.Amongpatientsknownlessthanfourmonths,71%hadhaemoglobin

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By year and first treatment mode, Norway 1980−2017New patients in RRT

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By year and age, Norway 1980−2017New patients in RRT

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Sinceregistrationstartedin1980therehasbeenacontinuousshiftinpatientage.BoththemaximumandthemedianageatstartofRRThaveincreased.Alsothe5-percentileand95-percentilevalues(i.e.includingthemajorityofpatients)haveincreasedwithasimilarnumberofyears.Butalsosmallerchildrenhavebeenaccepted;theyoungesteverstartedPDin2011atagetwodays.Sevenchildrenbelow16yearsstartedRRTin2017.

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By year, Norway 1980−2017Age of new patients in RRT

20

1980-89 1990-99 2000-04 2005-09 2010-14 2017Glomerulonephritis 35% 27% 18% 18% 16% 13%Pyelo/interstitialnephr. 15% 11% 11% 10% 9% 9%Polycysticdiseases 10% 9% 9% 8% 8% 9%Diabeticnephropathy 13% 11% 15% 16% 17% 18%Amyloidosis 6% 5% 3% 2% 2% 2%Vascular/hypertensive 7% 21% 28% 31% 35% 28%Immune/systemic 5% 5% 4% 4% 4% 8%Kidneytumour 1% 1% 1% 2% 1% 2%Myelomatosis 2% 2% 3% 3% 1% 1%Otherdefined 4% 4% 3% 4% 4% 5%Unknown 3% 3% 4% 4% 3% 5%

N: 2018 3234 2149 2556 2571 579Themainchangeovertimehasbeenanincreaseofvascular/hypertensivenephropathyandarelativereductionofglomerulonephritis.Whetherthisonlyreflectschangedcodingpracticeoratrueshiftisnotknown.

Diabeticnephropathyshowsatendencytoincreaseasprimarydiagnosiscauseforrenaldisease.In2017,30%ofthesewereregisteredashavingTypeIdiabetesmellitus.Includingalsopatientswithotherprimarydiagnosesofrenaldiseaseatotalof194patientswererecordedashavingdiabetesmellitusatstartofRRT(17%TypeI),thus33%ofnewpatientsinRRTwerediabetics.

ThetimefromonsetofdiabetestostartofRRTdifferedconsiderably.ForthepatientswithTypeIdiabetesthemediantimewas33years,whileforthepatientswithTypeIIdiabeticnephropathythemediantimewas16years.

CardiovasculardiseaseisoftenpresentatstartofRRT.Coronaryheartdiseasewasreportedin29%and19%hadanamnesticheartfailure.Echo-verifiedleftventricularhypertrophywasreportedin28%.Cerebrovasculardiseasewasreportedin14%andperipheralatheroscleroticdiseasein16%while11%hadchronicobstructivelungdisease.

NumberofbiopsieswithagivendiagnosisbyDecember31st2017.Bytheendof20171089diagnosesareregistered,bothrelatedtoprimarybiopsiesandfollow-upbiopsies.

Minimalchangenephropathy 35Focalandsegmentalglomerulosclerosisprimary 26Focalandsegmentalglomerulosclerosissecondary 16IgAnephropathy 176MesangioproliferativeglomerulonephrititswithoutIgA 9Lupusnephritis 37Endocapillaryproliferativeglomerulonephritis 10Membranousnephropathy 38Membranoproliferativeglomerulonephritis 21Anti-GBMnephritis 6ANCAassociatedglomerulonephritis 88Glomerulonephritiswithnecrosis/crescentsidiopathic 9

21

Sclerosingglomerulonephritis 2HenochSchönleinpurpura 23Vasculitis 2Thromboticmicroangiopathy 14Scleroderma 2Malignantnephrosclerosis 5Benignnephrosclerosis 101Diabeticnephropathy 91Amyloidosis 45Myelomakidney 7Fibrillaryglomerulonephritis 7Immunotacotidglomerulonephritis 0Preeclampsiaassociatedglomerulopathy 1Hereditarynephropathy,others 6Fabrydisease 13Alportdisease 15Thinbasementmembranedisease 25Tubulointerstitialnephritis 83Acutetubularnecrosis 24Calcineurininhibitortoxicity 3Sarcoidosis 1Endstagekidney 2Otherglomerular/kidneydiseaseunclassified 25Normalorslightunspecificchanges 36Notrepresentative 29Uncharacteristicatrophychanges 28Monoclonalimmunglobulindepositiondisease 0Densedepositdisease 3Diffuseproliferativeglomerulonephritis 1Cryoglobulinemia 0Cholesterolemboli 3Nocodeavailable 21

PrevalencedataCKD5byDecember31st2017.ThedataonCKD5patientsnotinRRTisnotcompleteastheregisterstartedtocollectthesedatain2016.The“bestguess”isthatthecoverageofthesepatientsisjustbelow60%.ThereporteddataonCKD5patientsnotinRRTshouldhencebeinterpretedwithcaution.Therewere319CKD5patientsintheregistrythatdidnotreceiverenalreplacementtherapybytheendof2017.Themedianlengthofstayinthiscategory,beforebeinginitiatedinRRTduring2017was10monthsinthe158patientswherethishadbeenregistered,rangingfrom0to128months.

22

PrevalencedataRRTbyDecember31st2017.Bytheendof2017,5,148patientsinNorwayreceivedrenalreplacementtherapy,i.e.975permillioninhabitants.Thisrepresentsanincreaseof179patientsor3.6%since2016.Medianagebytheendoftheyearwas62.0years,mean59.9yearsandrange2.5to96.4years.Gender:64.8%males.

Transplantationsandwaitinglist:Atotalof274renaltransplantswereperformedinNorwayin2017,i.e.51.9permillioninhabitants,16%wereretransplantations.Distributionoftransplantationswithdeceasedandlivingdonors,relationbetweenrecipientanddonoretcispresentedinthefiguresbelow.Simultaneouspancreasandkidney(SPK)transplantationwasperformedin11patients.

Inprinciple,transplantationisofferedtoallpatientsconsideredtoprofitfromit,withnostrictupperorloweragelimit.Theageofthe160first-DD-graftrecipientsin2017rangedfrom14to80years,withamedianageof57years.Outofthese,33%wereabovetheageof65and11%were75orolder.The69recipientsofafirstLD-graftwerefrom2to75years,withamedianageof50years.Regraftrecipients(n=45)werefrom14to75years,median56years.

1182

21239

1560

344

58

1963

526

119

2425

805

156

2974

1002

219

3445

1171

214

3584

1261

303

0

500

1000

1500

2000

2500

3000

3500

4000

1990 1995 2000 2005 2010 2015 2017

PD HD Tx

PrevalenceRenal replacement therapy in Norway

AhusArendal

BodøBærum

DrammenElverum

FinnmarkFørde

HarstadHaukeland

HGSDKristiansand SKristiansund N

LevangerLillehammer

RikshospitaletRingerike

SkienStavanger

STORTromsø

TrondheimTønsberg

UllevålØstfold

Ålesund

0 50 100

150

200

250

300

350

400

450

500

550

PD SenterHD HjemmeHD Tx

Prevalence by Senter, 2017Renal replacement therapy in Norway

23

0

50

100

150

200

250

300

1980

1985

1990

1995

2000

2005

2010

2015

DD (n=5,107) LD (n=2,821)

Norway 1980−2017Performed Renal Transplantations

0

50

100

150

200

250

300

1980

1985

1990

1995

2000

2005

2010

2015

ReTx (n=1,114) 1st Tx (n=6,814)

First vs. Re transplants, Norway 1980−2017Performed Renal Transplantations

LDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLDLD DDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDD

RikshospitaletHarstad

STORStavangerTønsberg

FørdeKristiansand S

RingerikeLillehammer

Kristiansund NNORWAY

TromsøHGSD

TrondheimHaukeland

ElverumØstfold

SkienUllevål

LevangerAhus

ArendalBodø

BærumÅlesund

Drammen

0% 20% 40% 60% 80% 100%

Percentage LD/DD per centerKidney (only) transplantations 2013−2017

24

Byend2017,337patients(63.8permill.)wereontheactivewaitinglistforaDDrenalgraft,similarasin2016.AmongthosewaitingbyDecember31st,mediantimeonthelistwas9monthsforafirsttransplant.60%hadwaitedlessthanoneyearand15%morethantwoyears.The197recipientstransplantedwithaDD-graftin2017hadamedianwaitingtimeof

premptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLDpremptLD otherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLDotherLD DDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDDD

RikshospitaletRingerikeTønsberg

StavangerHarstadArendal

SkienKristiansand S

LillehammerAhus

NORWAYElverum

LevangerHaukeland

ØstfoldSTORFørdeBodø

HGSDTrondheim

BærumTromsøUllevål

DrammenÅlesund

Kristiansund N

0% 20% 40% 60% 80% 100%

Percentage preemptiveLD/otherLD/DD per centerKidney (only) transplantations 2013−2017

0

25

50

75

100

1980

1985

1990

1995

2000

2005

2010

2015

UnrelatedOth RelatedOffspringParentSibling

Donor−recipient relationLD−transplantations 1980−2017

0%

20%

40%

60%

80%

100%

1980

1985

1990

1995

2000

2005

2010

2015

UnrelatedOth RelatedOffspringParentSibling

Donor−recipient relationLD−transplantations 1980−2017

25

13monthsforafirsttransplantand14monthsforaretransplantandamaximumof79monthsatthetimeofgrafting.

Patientandgraftsurvival:BelowdifferentKaplan-Meieranalysesongraft(notdeathcensored)andpatientsurvivalarepresented,crudeplotonly.Changesinbaselinecharacteristicsshouldbetakenintoconsideration,forexamplethatmedianagewhenstartingRRTisincreasingbytheyear.

0

50

100

150

200

250

300

350

400

2008 2009 2010 2011 2012 2013 2014 2015 2016 2017

Waitinglistkidney(only)Tx

75+, n=262665−74, n=2161

55−64, n=1696

35−54, n=1793

15−34, n=541

0−14, n=108

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14 16Years after RRT start

Patie

nt s

urvi

val p

roba

bilit

y

By age group, Norway 2000−2017Patient survival in RRT

26

75+, n=1725

65−74, n=1455

55−64, n=1130

35−54, n=1147

15−34, n=3320−14, n=61

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12Years after RRT start

Patie

nt s

urvi

val p

roba

bilit

yBy age group, Norway 2007−2017

Patient survival in RRT

PD−not Tx cand, n=616HD−not Tx cand, n=2759

HD−Tx cand, n=3387

PD−Tx cand, n=1138

Preemptive Tx, n=1025

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14 16Years after RRT start

Patie

nt s

urvi

val p

roba

bilit

y

By Tx−assessment and 1st treatment, Norway 2000−2017Patient survival in RRT

PD−not Tx cand, n=460

HD−not Tx cand, n=1840

HD−Tx cand, n=2060

PD−Tx cand, n=759

Preemptive Tx, n=731

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10Years after RRT start

Patie

nt s

urvi

val p

roba

bilit

y

By Tx−assessment and 1st treatment, Norway 2007−2017Patient survival in RRT

27

28

0−19, n=7220−34, n=11535−49, n=182

50−59, n=147

60+, n=217

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8Years after Tx

Gra

ft su

rviv

al p

roba

bilit

yBy age group, Norway 2007−2017

Graft survival, first LD kidney (only) transplant

p < 0.0001

1983−88, n=3831989−94, n=4571995−00, n=3992001−06, n=4842007−17, n=733

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14 16 18 20Years after Tx

Gra

ft su

rviv

al p

roba

bilit

y

By vintage, Norway 1983−2017Graft survival, first LD kidney (only) transplant

p < 0.0001

1983−88, n=4571989−94, n=5291995−00, n=5662001−06, n=638

2007−17, n=1652

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14 16 18 20Years after Tx

Gra

ft su

rviv

al p

roba

bilit

y

By vintage, Norway 1983−2017Graft survival, first DD kidney (only) transplant

29

p = 0.017

>2 yr, n=1301−2 yr, n=217

0−1 yr, n=334Preempt, n=273

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14Years after Tx

Gra

ft su

rviv

al p

roba

bilit

yBy time in dialysis, Norway 2000−2017

Graft survival, first LD kidney (only) transplant

p < 0.0001

>2 yr, n=584

1−2 yr, n=322

0−1 yr, n=418

Preempt, n=328

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10Years after Tx

Gra

ft su

rviv

al p

roba

bilit

y

By time in dialysis, Norway 2007−2017Graft survival, first DD kidney (only) transplant

p = 0.017

>2 yr, n=1301−2 yr, n=217

0−1 yr, n=334Preempt, n=273

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14Years after Tx

Gra

ft su

rviv

al p

roba

bilit

y

By time in dialysis, Norway 2000−2017Graft survival, first LD kidney (only) transplant

30

DeathinCKD5:Atotalof424patientsinCKD5diedduring2017,31ofpatientshadneverstartedRRT,193ofpatientswereinactivedialysisand109transplanted.Dialysistreatmentwasterminatedandfollowedbydeathin75patients.

p < 0.0001

>2 yr, n=584

1−2 yr, n=322

0−1 yr, n=418

Preempt, n=328

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10Years after Tx

Gra

ft su

rviv

al p

roba

bilit

yBy time in dialysis, Norway 2007−2017

Graft survival, first DD kidney (only) transplant

p < 0.0001Deceased, n=2392

Unrelated, n=343

Related, n=936

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10 12 14 16 18Years after Tx

Gra

ft su

rviv

al p

roba

bilit

y

By donor source, Norway 2000−2017Graft survival, first kidney (only) transplant

p < 0.0001

Deceased, n=2392

Unrelated, n=343

Related, n=936

0.00

0.25

0.50

0.75

1.00

0 2 4 6 8 10Years after Tx

Gra

ft su

rviv

al p

roba

bilit

y

By donor source, Norway 2007−2017Graft survival, first kidney (only) transplant

31

Medianageatdeathwas76years(mean74years),rangingfrom32to94years.MediantimefromstartofRRTuntildeathwas4.5years(mean7.7years),rangingfrom4daysto48years.Cardiaccomplications(29%)werethemostfrequentcausesofdeath,followedbymalignanttumours(21%)andinfections(20%).

Qualityindicators:Theregistryhaveimplemented22qualityindicators(seeappendix)thatwillbefollowedyearbyyeartoassurethequalityofthetreatmentthepatientsincludedintheregistryissubjectedto.Thesedataarepresentedinteractivelyatthissite(https://www.kvalitetsregistre.no/registers/464/resultater)andthequalityindicatorofpartinhomedialysisispresentedthreetimesperyearhere(https://helsenorge.no/Kvalitetsindikatorer/behandling-av-sykdom-og-overlevelse/andel-dialysepasienter-som-har-hjemmedialyse).Onlyashortsummaryoftheresultsispresentedasfiguresinthisreportforcompleteness.Theregistrationofallcasesofperitonitisduringtheyearhasnotbeencompleteandachangeincollectionprocedurehasbeenimplementedtocorrectthis.Thesedataishencenotpresentedinthisreport.AlsodataonacuterejectionsarenotpossibletoextractfromthedatabasewheretheseareregisteredatOUS-Rikshospitaletwhycompletedataisnotavailableandthisindicationisnotpresentedinthepresentreport.Dataonpartofthepatientsonthewaitinglistforakidneytransplantthathasbeenindialysisformorethan2yearsisnotrelevanttopresentonacenterlevel.In2017theparthadbeenreducedto10%from16%in2016.

171

347

2848

121

78

11

141

162

30

UllevålTrondheim

TromsøTønsberg

StavangerRingerike

LillehammerLevanger

Kristiansand SHaugesund

FørdeFinnmarkElverum

DrammenBodø

BærumÅlesund

Ahus

0 20 40 60 80 100%

per senter; 2017 (tall=antall pasienter)Andel CKD5 pasienter med BT

32

171

349

264

812

119

811

141

162

30

UllevålTrondheim

TromsøTønsberg

StavangerRingerike

LillehammerLevanger

Kristiansand SHaugesund

FørdeFinnmarkElverum

DrammenBodø

BærumÅlesund

Ahus

0 20 40 60 80 100%

per senter; 2017 (tall=antall pasienter)Andel CKD5 pasienter med fosfat20 mmol/L

14

1

3

35

18

2

8

11

1

17

6

1

10

1

15

2

23

UllevålTrondheim

TromsøTønsberg

StavangerRingerike

LillehammerLevanger

Kristiansand SHaugesund

FørdeElverum

DrammenBodø

BærumÅlesund

Ahus

0 20 40 60 80 100%

per senter; 2017 (tall=antall pasienter)Andel CKD5 pasienter med Hgb >10g/dL

33

296

840

266

74

1315

113

64

1443

194

1252

45

UllevålTrondheim

TromsøTønsberg

StavangerSkien

RingerikeRikshospitalet

LillehammerLevanger

Kristiansand SHaukeland

HaugesundHarstad

FørdeFinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

per senter; 2017 (tall=antall pasienter)Andel CKD5 pasienter som gjennomført Nyreskole

UllevålTrondheim

TromsøTønsberg

StrodStavanger

SkienRingerike

RikshospitaletØstfold

LillehammerLevanger

Kristiansund NKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senter (kjent > 4 mnd)Andel kjent ved oppstart dialyse

0

20

40

60

80

100

2012 2013 2014 2015 2016 2017

%

Norge 2012−2017 (kjent > 4 mnd)Andel kjent ved oppstart dialyse

34

UllevålTrondheim

TromsøTønsberg

StordStavanger

SkienRingerike

RikshospitaletØstfold

LillehammerLevanger

Kristiansund NKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senter (kjent > 4 mnd)Andel kjente HD pasienter som starter på fistel

0

20

40

60

80

100

2012 2013 2014 2015 2016 2017

%

Norge 2012−2017 (kjent > 4 mnd)Andel kjente HD pasienter som starter på fistel

UllevålTrondheim

TromsøTønsberg

StordStavanger

SkienRingerike

RikshospitaletØstfold

LillehammerLevanger

Kristiansund NKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senterAndel HD pasienter med Kt/V>2,3

35

0

20

40

60

80

100

2015 2016 2017

%Norge 2015−2017

Andel HD pasienter med Kt/V>2,3

UllevålTrondheim

TromsøTønsberg

StordStavanger

SkienRingerike

RikshospitaletØstfold

LillehammerLevanger

Kristiansund NKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senterAndel HD pasienter med predialytisk fosfat

36

UllevålTrondheim

TromsøTønsberg

StavangerSkien

ØstfoldLillehammer

LevangerKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

ArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senterAndel PD pasienter med Kt/V >1,7

0

20

40

60

80

100

2016 2017

%

Norge 2016−2017Andel PD pasienter med Kt/V >1,7

UllevålTrondheim

TromsøTønsberg

StordStavanger

SkienRingerike

RikshospitaletØstfold

LillehammerLevanger

Kristiansund NKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senterAndel Tx pasienter med BT

37

0

20

40

60

80

100

2013 2014 2015 2016 2017

%Norge 2013−2017

Andel Tx pasienter med BT

38

UllevålTrondheim

TromsøTønsberg

StordStavanger

SkienRingerike

RikshospitaletØstfold

LillehammerLevanger

Kristiansund NKristiansand S

HaukelandHaugesund

HarstadFørde

FinnmarkElverum

DrammenBodø

BærumArendalÅlesund

Ahus

0 20 40 60 80 100%

2016 2017

per senterAndel Tx pasienter med minst 4 transplantasjonskontroller

0

20

40

60

80

100

2016 2017

%

Norge 2016−2017Andel Tx pasienter med minst 4 transplantasjonskontroller

39

Concludingremarks:TheincidenceofpatientsinCKD5stillshowsanincreasingtrendandpatientsstartingRRTissteadilybeingolderbytheyear.Wheninterpretingtheincidencerate,itshouldbekeptinmindthatthetrueincidencefirstwillbeknownwhenthecoverageofCKD5patientsnotinRRTreachesahigherlevel.Theprevalenceisalsoincreasing,majorlydrivenbyanincreasedsurvivalinRRT.DespitetheincreasedageinpatientsstartingRRTthesurvivalisincreasingAworryingtrendistheincreasingwaitinglistforkidneytransplantation.Actionhasbeentakentoincreasethenumberoflivingdonorswithagoodresult,butthereisstillneedofmoreavailableorganfortransplantation.

Duringtheanalysisofthe22qualityvariablesintheregistrytwoareaswherefurtherinvestigationofunderlyingreasonsareneeded;i)bloodpressuretreatmentintransplantpatientsandii)bloodaccessusedwhenstartingpatientsinhaemodialysis.

RegistrydataarealsoregularlyusedbyNorwegiannephrologistsasbasisforscientificpapers,congresspresentationsandPhD-thesis.Alistofpublicationsispublishedonwww.nephro.noalongwiththeannualreports.During2017atotalof31internationalpeerreviewedpapersandfivePhD-theseshavebeenmoreorlessbasedupondatafromtheregistry.

DatadeliveredtotheERA-EDTARegistryinAmsterdamareincludedinitsreportsandpublications;somedataarealsoforwardedtotheUSRDS-reports(thechapterof“InternationalComparisons”)Regardlessofstatus,thecooperationwithallNorwegiannephrologistsandnephropathologists,demandingtheirsteadyeffortstokeeptheregistryupdated,hasalwaysbeen,andwillalwaysbe,aprerequisiteforkeepingacompleteandreliableregistry.Allhardworkovertheentirecountryisacknowledged!

Reportcompleted13.12.2018

40

Appendix: New pat in RRT 2017 Pat. in RRT by 31.12.2017 Dialyses etc. 2017 Died 2017

Sa

telli

ttes

HD/H

DF

PD

Pre -

empt

ive

Tota

l

HD/H

DF

Hjem

meH

D

PD

Gra

ft

Tota

l

HD se

ssio

ns

Pl.e

xch.

Oth

er

Dial

.pat

Tx- p

at

Not

tx-c

and.

AHUS 32 25 8 65 120 10 45 354 529 20,108 0 0 22 11 86

Arendal 8 1 2 11 26 1 9 80 116 4,139 0 121 8 4 23

Bergen 4 25 3 2 30 92 1 7 262 362 13,844 91 47 10 14 50

Bodø 8 14 10 1 25 72 0 23 167 262 10,421 32 0 9 3 57

Bærum 7 3 10 24 1 0 50 75 3,815 0 0 4 19

Drammen 1 14 10 3 27 43 2 15 176 236 7,330 49 26 16 4 14

Elverum 1 22 9 2 33 58 1 16 129 204 8,543 0 40 15 1 45

Finnmark 3 3 2 5 14 0 9 40 63 1,938 0 0 13

Førde 2 12 1 13 35 0 2 56 93 5,160 5 0 4 1 28

Harstad 2 1 3 11 0 0 42 53 1,460 0 0 5 5

Haugesund 2 7 1 2 10 31 0 3 62 96 4,364 6 28 8 2 18

Hønefoss 1 9 7 2 18 32 0 0 58 90 4,545 0 0 7 2 18

Kristiansand S 1 8 8 40 0 10 126 176 6,721 20 0 10 4 34 Kristiansund N

1 10 6 2

18 27 0 0 38

65 3,409 0 0

5 14

Levanger 6 28 9 5 42 51 0 9 83 143 8,742 0 76 11 3 27

Lillehammer 3 3 5 8 50 1 20 157 228 6,813 34 0 15 3 40

Rikshospitalet 7 3 10 11 1 0 173 185 2,776 283 67 5 4

Stavanger 14 10 2 26 69 0 12 219 300 10,960 13 44 15 6 54

Stord 22 2 6 30 10 0 0 18 28 1,435 0 0 1 2 6

Telemark 3 2 2 54 2 18 124 198 8,782 70 0 8 4 45

Tromsø 3 15 5 1 21 29 2 14 96 141 5,749 18 0 14 5 25

Trondheim 4 22 8 2 32 76 6 12 222 316 13,071 131 541 17 8 57

Tønsberg 11 10 7 28 27 0 13 159 199 4,542 62 53 11 7 20

Ullevål 20 20 7 47 98 1 50 354 503 16,938 37 30 12 75

Østfold 2 26 4 6 36 86 0 11 207 304 13,744 35 0 13 5 44

Ålesund 1 17 4 21 46 0 5 132 183 6,868 96 0 10 4 28

SUM 360 146 73 579 1,232 29 303 3,584 5,148 196,217 982 1,043 268 110 849

# Pr. mill innb.

68.2 27.7 13.8 109.7 233.4 5.5 57.4 679.0 975.4

160.9

% of total 62.2 25.2 12.6 100,0 23.9 0.6 5.9 69.6 100,0 16.5

41

27-11-2017

NorskNyreregister--Kvalitetsmål

Pasientgruppe Kvalitetsmål Måltall Hvamålerdet?Biopsi Andelmedalvorligekomplikasjoneri

forbindelsemedbiopsitaking(definertsomblodtransfusjonellerintervensjon)

10g/dL(10-12hvisESA)

75% Målpåomguidelinesoganbefalingerfølges

Gjennomført”Nyreskole”vedstartiCKD5(hviskjentavnefrolog>4mnd.)

75% Fangeoppatbehandlingenforhverenkeltpasienttilpassedenenkeltepasientogerplanlagtigodtid.

27-11-2017

Pasientgruppe Kvalitetsmål Måltall Hvamålerdet?Dialyse(felles) Andelkjent>4mndførdialyseoppstart 75% Fangespasienteneoppavavdelingen?

Henvisningspraksis,ressurserogopplæringavprimærhelsetjenesteogkollegaer

Andelihjemmedialyse(hjemmeHD+PD)

30% Målpåomindividualisertbehandlingetterstrebesistortnokomfang

Hemodialyse AndelmedukentligKt/V>2,3(inkludertrestfunksjon)

80% Målpåbevissthetogkvalitetavdialysebehandlingen

Andelpasienter,kjent>4mndr,somstarterHDpåfistel

75% Erdetenplanfornåroghvordanpasienteneskalstarte?Interneprosedyrerforåplanleggedialyseoppstart

Andelmedpredialytiskfosfat<1,78mmol/L

75% Målpåfokusogbehandlingavmetabolskeforstyrrelserogkomplikasjoner

Peritonealdialyse AndelmedukentligKt/V>1,7(inkludertrestfunksjon)

80%? Målpåbevissthetogkvalitetavdialysebehandlingen

Antallperitonitterperår ≤0.5/pas.år Målpåatbehandlingenblirutførtpåtilfredsstillendemåte

Transplantasjon Andelmedblodtrykkunder130/80mmHg

80% Målpåomguidelinesoganbefalingerfølges

Andelsombrukerstatin 80% Målpåomguidelinesoganbefalingerfølges

Andelmed≥4transplantasjonskontrollerperår

80% Målpåompasienteneblirtatthåndompåengodnokmåte

AntallaktivtpåTx-ventelistemeddialysetid>2år(unntattPRA≥80%)

<10% Målpåombehandlingstilbudetergodtnok

Biopsipåvistakuttrejeksjonførsteårettertransplantasjon

<20% Overordnendemålpåombehandlingenergodtnoktilpassetpasientene

Graftoverlevelse vs.ScandiTx Sammenligneroverordnedekvalitetpåbehandlingeniforholdtillandsomernaturligåsammenlignemed(Norden)