Patient-centeredness of integrated care programs for people with multimorbidity. Results from the European ICARE4EU project

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Rinnakkaistallenteet Yhteiskuntatieteiden ja kauppatieteiden tiedekunta

2017

Patient-centeredness of integrated care programs for people with

multimorbidity. Results from the European ICARE4EU project

van der Heide Iris

Elsevier BV

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CC BY-NC-ND https://creativecommons.org/licenses/by-nc-nd/4.0/

http://dx.doi.org/10.1016/j.healthpol.2017.10.005

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Health Policy

jo u rn al h om ep a ge :w w w . e l s e v i e r . c o m / l o c a t e / h e a l t h p o l

Patient-centeredness of integrated care programs for people with multimorbidity. Results from the European ICARE4EU project ^夽

Iris van der Heide

, Sanne Snoeijs

, Sabrina Quattrini

, Verena Struckmann

, Anneli Hujala

, Franc¸ ois Schellevis

, Mieke Rijken

aNetherlandsInstituteforHealthServicesResearch(NIVEL),Utrecht,TheNetherlands

bCentreforSocio-EconomicResearchonAgeing,NationalInstituteofHealthandScienceonAgeing(INRCA),Ancona,Italy

cTechnicalUniversityofBerlin,Berlin,Germany

dUniversityofEasternFinland,Kuopio,Finland

eVUUniversity,Amsterdam,TheNetherlands

a r t i c l e i n f o

Articlehistory:

Received14July2016

Receivedinrevisedform26October2017 Accepted30October2017

Keywords:

Multimorbidity Patient-centeredness Integratedcareprograms Europe

a b s t r a c t

Introduction:Thispaperaimstosupporttheimplementationofpatient-centeredcareforpeoplewith multimorbidityinEurope,byprovidinginsightintowaysinwhichpatient-centerednessiscurrently shapedinintegratedcareprogramsforpeoplewithmultimorbidityinEuropeancountries.

Methods:In2014,expertorganizationsin31Europeancountriesidentified200integratedcarepractices (‘programs’)in25countriesofwhich123wereincludedinourstudy.Managersof112programsfrom 24countriescompletedaquestionnaireaboutcharacteristicsandresultsoftheprogram,includingques- tionsonelementsofpatient-centeredness.Eightprogramsthatwereconsideredespeciallyinnovative orpromisingwereanalyzedindepth.

Results:Programsusedvariousmethodologiestoinvolvepeoplewithmultimorbidityindecision-making, suchasmotivationalinterviewingandnarrativecounselingtechniques.In79programsindividualcare plansweredevelopedtogetherwithpatients.Fewprogramshadalreadybeensystematicallyevaluated, butinoneprogramitwasshownthatworkingwithindividualcareplansbasedonpatients’goalsand resourcesresultedinincreasedpatientsatisfactionwithcare.Variousbarrierstodeliverpatient-centered carewerereported,includinginadequateknowledgeandskillsofbothpatientsandprofessionals.

Conclusion: In many European countries innovative approaches are applied to increase patient- centerednessofcareforpeoplewithmultimorbidity.Toassesstheirpotentialbenefitsandconditionsfor implementation,thoroughprocessandoutcomeevaluationsofprogramsareurgentlyneeded.

©2017TheAuthors.PublishedbyElsevierIrelandLtd.ThisisanopenaccessarticleundertheCC BY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/4.0/).

1. Introduction

Anestimated50millionpeopleinEuropesufferfrommultiple chronicconditions(multimorbidity),anumberthatisexpectedto increase[1].Peoplewithmultimorbidityusuallyneedlong-term carefromprofessionalsofmultipledisciplines.Inhealthsystems alloverEurope,careiscurrentlyorganizedaroundsinglediseases andtreatmentdecisionsareoftendirectedexclusivelyatimprov- ingclinicaloutcomes[2].Thiscareapproachdoesnotrespondto

夽OpenAccessforthisarticleismadepossiblebyacollaborationbetweenHealth PolicyandTheEuropeanObservatoryonHealthSystemsandPolicies.

∗ Correspondingauthorat:NetherlandsInstituteforHealthServicesResearch (NIVEL),POBox1568,3500BN,Utrecht,TheNetherlands.

E-mailaddress:i.vanderheide@nivel.nl(I.vanderHeide).

theneedsofpeoplewhosufferfrommultimorbidity.First,because evidencethatdisease-specifictreatmentoptionsareeffectivein peoplewithmultiplechronicdiseasesisoftenlacking[3,4].Clin- icalpracticeguidelinesthatfocusonthemanagementofasingle diseasecanthereforebeimpractical,irrelevantorevenharmfulfor peoplewithmultimorbidity[5].Second,clinicaloutcomesmaynot alwaysberelevantfromapatientperspective,andinmultimor- bidityinparticular,peoplemayattachgreatervaluetofunctional outcomesandwellbeing.

Health systems couldbecome more responsiveto the com- prehensiveneedsandpreferencesofpeoplewithmultimorbidity, when a shift is made from a disease orientated to a person- centeredcareapproach [6].Person-centeredorpatient-centered careencompassesmanyfacetsandcanbedefinedinvariousways [7],butinessenceitrefersto“carethatisrespectfulofandrespon-

https://doi.org/10.1016/j.healthpol.2017.10.005

0168-8510/©2017TheAuthors.PublishedbyElsevierIrelandLtd.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/by- nc-nd/4.0/).

siveto individual patients’ preferences, needs, and values, and ensures thatpatient values guideall clinicaldecisions” [8]. For peoplewithmultimorbidity,someaspectsofpatient-centeredcare seemespeciallyimportantinordertoexperiencegoodqualityof care:1)takingtheirindividualneeds,preferencesandresourcesas astartingpointforthedevelopmentandevaluationofanindivid- ualcareplan[9];2)involvinginformalcarersinthecareprocess [10,11];and3)involvingallrelevantprofessionaldisciplinesinthe careprocessandmakingsurethatthedeliveryofmultidisciplinary careiscoordinated[10].

Individualcareplansareintendedtosupporttheprovisionof holisticcarethatistailoredtotheneedsandpreferencesofpatients [12,13].Therefore,individualcareplansneedtoincludethehealth goalsthatareconsideredrelevantbypatients.Thesehealthgoals reflectpatients’needsandprioritiesandshouldguidetheprocess ofshareddecision-making.Forthispurpose,patientsneedtobe well-informedaboutthecareandtreatmentoptionstheyhavein allphasesoftheirillnessprocesstomeettheir(changing)needs, andtheirpreferenceswithrespecttotheseoptionsshouldguideall careandtreatmentdecisions[5,7].Inaddition,tocustomizecareto theneedsofpatients,itisimportanttotakepatients’resourcesinto account[14,15].Patients’resourcesmayincludetheirself-efficacy expectations,healthliteracylevelandsocialnetwork[16–18],next tosocio-economicresources suchasincome or insuranceplan.

Patientswithstrongself-efficacybeliefs,ahighlevelofhealthliter- acyandastrongsocialnetworkmaybemorecapableofmanaging theirhealthconditionandcoordinatingcarethanpatientswithless oftheseresources[16–18].Thislattergroupofpatientsmayneed moresupportfromcareprofessionalsinmanagingtheirhealthand caresituation.

Manypatientswithmultimorbidityreceivesupportfrominfor- malcarers(familymembersorfriends),whoshouldthereforebe recognizedasco-careproviders[10].However,theburdenofcar- ingmaybehigh,bothphysicalandemotional,andcouldevenlead tohealthproblemsofinformalcarers[19].Therefore,informalcar- ersshouldalsoberegardedasco-clients,withspecificneedsfor support.Thisdoubleroleofinformalcarersneedtobetakeninto accountbyprofessionalcareproviderswhenprovidingcaretopeo- plewithmultimorbidity.

Receiving care from differentcare providers is often neces- sary,butcouldatthesametimebeburdensomeforpeoplewith multimorbidity. People with multimorbidity may, for instance, needtofollow varioustreatmentregimens and frequentlyvisit multiplecareproviders[20].Receivinguncoordinatedcarefrom multiplecareproviderscouldleadtoinefficientcareandunnec- essaryduplications,forinstanceofdiagnostictests[3].In some cases a lackof coordination couldeven inducehealth risks for patients,forinstancewhenpatientsreceiveconflictingtreatment andmedicationrecommendationsfromdifferentcare providers [20]. Multidisciplinarycollaborationand coordination ofcare is therefore of great importance for people with multimorbidity.

Coordinationofcaredoesnotonlyconcerninterdisciplinarycoor- dination,butalsocontinuityofcareovertime,forinstancethrough informationsharingandtheestablishmentoflong-termcollabora- tions[21].

Variouskeypapersandreportshavebeenpublishedonthetopic ofpatient-centeredness[22–29].Yet,thereishardlyanyevidence onhow toprovide patient-centered care specifically topeople withmultimorbidity,becausefewscientificstudieshavebeencon- ductedinthisarea[30].Therefore,inthisstudyweaimtogain insightinapproachestoimprovepatient-centerednessinmulti- morbiditycarebydrawingonpracticeexperiences.Theobjectives ofthis paper aretoprovideinsights in1) theextenttowhich, and2)waysinwhichpatient-centerednessiscurrentlyaddressed inintegratedcarepracticesor‘programs’forpeoplewithmulti- morbidityinEuropeancountries.Theseinsightswillbeobtained

fromdatacollectedintheICARE4EUproject,whichreceivedco- fundingfromtheEUHealthProgramme2008–2013[31].Theaim of theICARE4EUproject, whichran from2013to2016,wasto increaseanddisseminateknowledgeofEuropeanintegratedcare programsaddressingmultimorbidity,andtoidentifyhighpoten- tialprogramsfromtheperspectivesoftheirpatient-centeredness;

managementpracticesandprofessionalcompetencies;theuseof eHealthtechnologies;andtheirfinancingmethods.Insightsfrom thecurrentpaperonthewayspatient-centerednessisaddressed in theseprograms couldbe usedby policy-makersand service providerstodevelop policies,strategies and practices aimedat providingpatient-centeredcareforpeoplewithmultimorbidity.

2. Methods

2.1. Identificationandselectionofprograms

In2014theICARE4EUproject[31]startedwiththecollection of data about local practices or ‘programs’ that provide inte- gratedcareforpeoplewithmultimorbidity.Thiswasdonewith thehelpofexpertorganizationsin31Europeancountries.These expertorganizationswereselectedfromtheinternationalnetwork oftheICARE4EUpartnerinstitutes,whichincludedgovernmen- talbodies and knowledgeinstitutes inthe31 countries. Expert organizationshadtomeet thefollowingcriteria:1)beaformal body;2)haveexpertiseonchronicillnesscare,preferablyalsoon multimorbiditycare;3)haveanationwideoverviewofdevelop- mentsin(national,regionalorlocal) chronicillness careand/or long-termcareinthecountry(innovative,multi-disciplinarycare approaches)orhaveaccesstothisinformationbyanextensivenet- workofexperts/expertorganizationsthroughoutthecountry;4) beabletocommunicatewiththeprojectteaminEnglish;5)be abletoprovidereliableinformationonthemulti-disciplinarycare approaches/programsforpeoplewithmultiplechronicconditions intheircountry;and6)havenocompetinginterests(forinstance, financialinterestsinpromotionofspecificprograms).Theeligibil- ityofpotentialexpertorganizationswascheckedbytheICARE4EU projectteamfollowing a stepwiseprocedure, includingat least twointerviewsbyphone.Expertorganizationsthatwereconsid- eredeligibleandagreedtoparticipateweresubcontractedbythe ICARE4EUpartnerinstitutesandreceiveddetailedinformationand alistofcriteria,definedbytheICARE4EUprojectteam,thatallhad tobemetbytheprogramsinordertobeincluded.Thesecriteria were:

•beingdesignedtoprovidecarefor(adult)peoplewithmultimor- bidityorcontainspecificelementstoprovidecareforpeoplewith multimorbidity,

•targetpeoplewithmultimorbidity,definedastwoormoremedi- cally(i.e.somaticand/orpsychiatric)diagnosedchronic(notfully curable)orlonglasting(atleastsixmonths)diseases,ofwhichat leastoneofa(primarily)somaticnature,

•involveoneormoremedicalservice(s),andinvolvecooperation betweenatleasttwoservices(theseservicesmaybepartofthe sameorganization,forexampleserviceswithinahospital,ormay bepartofdifferentorganizations,forexamplebetweenmedical careandsocialcare),

•beingevaluatedorevaluableinsomeway,

•currentlyrunning(intheyearofthefieldstudy)orfinishedless than24monthsagoorstartingwithinthenext12months.

Atotalof200programsfrom25countrieswereinitiallyidenti- fiedbytheexpertorganizations.Afterbeingcarefullyreviewedby theICARE4EUprojectteam,123programsfrom25countriesmet allcriteriamentionedaboveandwerethereforeeligible.

Fig.1. Programselectionprocess.

2.2. Datacollection

In2014,whenthedatawascollected,questionnairescovering ourresearchthemeswereneitheravailableinthemanylanguages spokenintheEUnorvalidatedinallcountries.Therefore,newsur- veyquestionsweredevelopedbytheICARE4EUprojectpartners, whichwasdonebyastepwiseapproach,inwhich theresearch themes(e.g.person-centeredness,integratedcare,financing)were firstidentifiedbyallprojectpartnerstogether,thenoperationalized basedontheoreticalmodelsandempiricalstudiesbytheproject partnerwithexpertknowledgeoftheparticulartheme,andsubse- quentlyformulatedinsurveyquestions,whichwerecommented uponbyallprojectpartners.The(adapted)surveyquestionswere then pretested by the ICARE4EU project partners in their own country,andtranslatedinelevenlanguagesbyapplyingforward translationonly.

Theexpertorganizationswereaskedtosendinformationabout theICARE4EU projectanda linktothesurveyquestionstothe program managers of all eligible programs theyhad identified in theircountry. The survey questions covered a broad variety of program characteristics, including characteristics related to patient-centeredness. In this waydatawere receivedfrom112 programsin 24 countries,as thedatacollection ofthe11 pro- gramsidentifiedinFrancefailed,duetostaffproblemsoftheFrench expertorganization.Fordetailedinformationonthecharacteristics ofthese112programs,pleasesee[32,33].

ThenextstepintheICARE4EUprojectwastoselectprograms fromthelistof112programsforfurtherstudybyevaluatingthe surveydata.Tobeselected,programshadtomeetthefollowing criteria:

•beingimplemented,

•havingincludedasubstantialnumberofpatients,

•beingevaluatedorplannedtobeevaluated.

Inaddition,programshadtoshowinnovativeorinterestingele- mentsfromoneormoreofthefourperspectivesoftheICARE4EU project[31]: 1) patient-centeredness, 2) integrationof care,3) useofe-healthtechnologies,and4)financingmethods.Thiswas evaluatedbasedonquantitativedata(e.g.reportedprogramchar- acteristics).Basedonthesecriteria,allprojectpartnersprovided eachprogramwithascore,resultinginashortlistof25programs withpotentialforfurtherstudy.

Fromthisshortlisttheprojectpartnersselectedtwoprograms for each perspective, that were considered specifically innova- tiveorinterestingfromthisperspective.Thisselectionwasmade basedonthequalitativedescriptionsoftheaimsoftheprogram, itsstrengthsandweaknesses,anduploadedpolicyorevaluation reports(ifany).Theprojectteamreachedconsensusontheselec- tionofthefollowingeightprogramsforfurtherstudy:PROTOCOL 3Program(Belgium)[34],‘Diabeticcare’NPO(Bulgaria)[35],Tel- eRehabilitation program(Cyprus) [36], POTKUproject(Finland) [37], Gesundes Kinzigtalprogram (Germany) [38], INCA model

Table1

Numberofprogramsthataddressaspectsofpatient-centeredness(N=112programs).

Elements of patient-centeredness Aspects of patient-centeredness Number of programs Element 1: responding to patients’

needs, preferences and resources in developing individual care plans

Applies methodologiesor tools to involve patients in decision-making

99

Addresses specific subgroups 77

Provides patient education materials 69 Develops individual care plans together with patients 80 Patient education materials adapted to subgroups 21 Element 2: involving informal carers Informal carers are a target group 46 Addresses informal carers as co-care providers 30 Addresses informal carers as co-clients 22 Element 3: coordination and

multidisciplinary collaboration

Multidisciplinary collaboration is main objective 88 Improving care coordination is main objective 80 Appointing a singlecare provider for communication with patient

73 Multi-professional care groups established 77 Uses a digital communication system to support communication between care providers

44 Merging of units (within a care organization) established

21 Merging of care organizations established 25

Green:in75–100%oftheprograms;lightgreen:in50–74%oftheprograms;orange:in25–49%oftheprograms;red:inlessthan25%oftheprograms.(Forinterpretationof thereferencestocolourinthisfigurelegend,thereaderisreferredtothewebversionofthisarticle).

(theNetherlands)[39],ClinicforMultimorbidityandStrategyfor ChronicCarein ValenciaRegion (Spain)[40],and Poypharmacy (Denmark)[41].Subsequently it wascheckedwiththe country expertsintherespectivecountrywhetheritwasindeedaninnova- tiveorinterestingprogram(asa‘secondopinion’)andinsomecases informationwasalsoverifiedbycontactingtheprogrammanager.

SeeFig.1foraflowchartoftheprogramselectionprocess.

AllselectedprogramsagreedtobevisitedbyICARE4EUproject team members, and semi-structured interviews with different stakeholders(programmanager,careprofessionalsfromvarious disciplines or services, representatives of patients’ or informal carers’ associations) were done, in addition to the analysis of (translated)programmaterialsorreports.Theinterviewswerecon- ducted bytwo ICARE4EUprojectteam membersfromdifferent partnerorganizations,bytheuseofatopicguide.Inadditionto thelistedtopicsstakeholderswerefreetodiscussotherrelevant programrelatedtopics.Observationnotesweretakenduringthis interviewandbasedonthesenotesashortreportwasmadebythe twoteammemberswhoconductedtheinterview.Duringprogram visits,aninterpreterwaspresentwhenneededtoassuresmooth communication.SeeAppendixAinSupplementarymaterialsfor moredetailsregardingthesitevisits.

Inthecurrentpaperinformationfromthesesitevisitsisused inadditiontothesurveydatabasedonthe112programs,inorder toincreaseourunderstandingofhowprogramshaveincorporated elementsofpatient-centerednessintheircaredeliverytopeople withmultimorbidityandtoillustratetheresultsfromthesurvey.

2.3. Measures

2.3.1. Patient-centeredness

Based on literature [42–51],we distinguishedthe following elementsofpatient-centeredcare:1)takingpatients’needs,prefer- encesandresourcesintoaccountindevelopingandimplementing anindividualcareplan,2)involvinginformalcarersasco-clients andco-careproviders,and3)multidisciplinarycollaborationand carecoordination.

Withrespecttothefirstelement,wedevelopedsurveyques- tionstoassesswhetherprograms:a)addressedspecificsubgroups (peopleaged>65;peoplewithlowhealthliteracy;peoplefromlow incomegroups;ethnicminorities;peoplewithlearning/mentaldis- abilities;peoplewithcognitiveimpairments;peoplewithsensory impairments;peoplewith(other)physicaldisabilities;peopleliv- inginsociallydeprivedareas;othersubgroup);b)providedpatient

educationmaterials(yes/no)and ifso,whetherthesematerials wereadaptedforspecificpatientcharacteristics(levelofhealthlit- eracy;language;culture;other);c)appliedmethodologiesortools toinvolvepatientsindecision-making(motivationalinterviewing;

providinginformationalleafletswithtreatmentoptions;usingweb basedtooltopreparepatientsforconsultations;activeparticipa- tionofpatientsinthedecision makingprocess concerningcare choices;activeparticipationofpatientsinthedevelopmentofa personalcareplan;askinganinformalcarertoattendtheconsul- tation;other);d)developedindividualcareplanstogetherwithall orpartoftheparticipatingpatients(yes/no).

Toassesstheinvolvementofinformal carers,weformulated threesurveyquestions:a)whetherinformalcarerswereatarget populationoftheprogram (yes/no);b)whetherinformalcarers wereaddressedintheprogramasco-clients(yes/no);c)whether informalcarerswereinvolvedintheprogramasco-careproviders (yes/no).

Regardingcollaborationandcoordination,weformulatedsur- veyquestionsabout:a)whetherimprovingcoordinationofcare and/ormultidisciplinarycollaborationand/orintegrationofunits (withinoneorganization)and/orintegrationofcareorganizations weremainobjectivesoftheprogram(yes/no);b)whetherasin- glecareproviderwasresponsibleforgeneralcommunicationwith thepatient(yes/no);c)whethermulti-professionalcaregroupshad beenestablished(yes/no);d)whetheradigitalcommunicationsys- temwasusedtosupportcommunicationbetweencareproviders (yes/no).

2.3.2. Barriersforpatient-centeredcare

Toassesspotentialbarrierstoimprovepatient-centeredness, weaskedtherespondentsofthesurveyquestionnairetoindicate towhichextenttheyagreedordisagreedthatthefollowingissues [52]werehamperingpatientinvolvementorapatientcentered approachintheprogram:inadequateknowledgeorskillsofcare providers; inadequateknowledge or skillsof patients;negative attitudesofcareproviders;negativeattitudesofpatients;inade- quatesupportforcareproviders(e.g.education,tools);inadequate supportforpatients(e.g.education,tools);inadequatecollabora- tionbetweencareproviders;lackoftimeofcareproviders;lackofa clearmanagerialvisionorstrategyonpatientinvolvement/patient centeredness;inadequatefunding(e.g.forimplementationofsup- portivetools);inadequatesupportforinformalcarersasco-care providers.

2.4. Analysis

Thesurveydatawereanalyzeddescriptively(e.g.frequencies) byIvdHandillustratedbyqualitativeinformationobtainedfrom theshortreportsbasedonthenotestakenduringtheeightsite visits.Intheresultssection,informationbasedonthesitevisits willbepresentedintextboxes.

3. Results

3.1. Patientinvolvementindesigningtheprograms

Althoughthefocusofthisstudyisontheextentandwayskey aspectsof patient-centeredness are addressedat theindividual (micro)level inintegratedcareprogramstargeting peoplewith multimorbidity, we first describe here towhat extentpatients and/orinformalcarerswereinvolved atacollectivelevelinthe developmentand designoftheprograms.Dataprovidedbythe programmanagersshowthatpatientsortheirrepresentativeswere involvedinthedevelopmentof60ofthe112programs(54%).Their levelofinvolvement,intermsoflevelsofaparticipationladder [53],inmostoftheseprogramswashoweverrelativelylow.Inthe majorityoftheseprogramspatientsortheirrepresentativeswere informed(38 programs) and/orconsulted (42 programs)about thedevelopmentoftheprogram.Moreadvancedlevelsofpatient involvementwerereportedforlessprograms:in22programs(rep- resentativesof)patientswereaskedfortheiradvice,whichwasin principlebinding,in26programspatientsworkedinpartnership withprofessionalstodeveloptheprogram(‘co-producing’)andin fiveprogramspatientshadafinalvoteindecision-makingaboutthe developmentoftheprogram.Fewprogramshadbeen(co-)initiated byorganizationsofpatients(10programs)orinformalcarers(2 programs).Despitetherelativelylowlevelofpatientinvolvement atthecollectivelevel,mostprogramsaimedtoimprovepatient involvementortheinvolvementofinformalcarersattheindivid- uallevel,respectivelyin82and52programsthesewerereported aspartoftheirmainobjectives.

3.2. Aspectsofpatient-centeredcareaddressedintheprograms 3.2.1. Respondingtopatients’needs,preferencesandresourcesin developingindividualcareplans

Asshown inTable1,56of the112programsaddressedone or more specific subgroup(s). (Frail) elderly were most often addressedasasubgroupintheseprograms(in46programs)and ethnicminorities were leastoften addressed (in10 programs).

Othersubgroupsthatwereaddressedincludedpeoplewithlower healthliteracy,mentaldisabilities,cognitiveimpairments,sensory impairments,andpeoplelivinginsociallydeprivedareasorfrom lowincomegroups.

In69outofthe112programs,patienteducationmaterialwas provided,butonlyfewprogramshadadaptedtheirpatientedu- cationmaterialstospecificpatientcharacteristicssuchaslevelof healthliteracy,otherlanguagesorculturalbackground.

Apartfrompatienteducation,severalmethodologieswereused tosupport patient involvement in decision-making: organizing pre-treatmentdiscussionsessionswithinvolveddoctorsonhowto motivatepatientsindecision-making;providingcommunication trainingtocareproviderstoencouragepatientstoparticipatein decision-making;usingnarrativecounselingtechniquesinorderto understandtheneedsofpatients;usingweb-basedtoolstoprepare patientsfortheirconsultations;andusingmotivationalinterview- ingtechniques.

In79programsindividualcareplansweredevelopedtogether withpatients.ThevisitedFinnishPOTKUprojectillustratesthis,as

Box1:Illustrationof how individualcare planscould takepatients’resourcesintoaccount

InthevisitedStrategyforChronicCareintheValenciaRegion specialattentionwaspaidtothecareprocessesofhighlycom- plexchronicpatients,includingpatientswithmultimorbidity.In theStrategyforChronicCarepatients’ownresourcestoman- agetheirconditionwereassessedasanimportant element ofidentifyingcomplexpatientsinneedforcasemanagement [40]. In this program nurses in hospitals and communities identifiedthemostcomplexpatientsandstartedajointcase management trajectory with thesepatients. In thesecases complexityreferredtomedicalcomplexity and/orfunctional dependency,butalsotofragilefamilysupportoraneedfor socialservices.

Inthe visited Finnish POTKU project,which mainaim was toimprovepatient-centerednessofchronicillnessinprimary care,morethan16,000individualcareplansweredeveloped.

Theseplansconsistedoffivesections:1.patientneeds(which healthrelatedproblemsmattermosttothepatient?),2.patient goals (what change in health status the patient is aiming for?)3.measures(whichhealthservicesandpatientactions areplannedtoachievethegoals?),4.follow-up andassess- ment (when and how will the implementation of the care plananditsresultsbeevaluated?),5.Informationaboutpre- scribedmedication, medicaldiagnoses andcontact person.

ThePOTKUprojectshowedthattheuseoftheseindividual careplansincreased patient satisfaction withcare: patients whohadanindividualcareplanreportedsignificantlyhigher scoresonall dimensionsofthe PACIC(PatientAssessment ofChronicIllnessQuestionnaire;[54])thanpatients without suchaplan[37].Inaddition,carewascustomizedaccording topatientprofilesthatwerebasedonboththecomplexityof themedicalcondition andtreatment, and onthe resources patientshave attheir disposal tocope withtheir condition andcare[37].Combining thesedimensionsresultedinfour clientships:1.self-managementclientship(medical problem notcomplex and good resources)2. cooperationclientship (medicalproblemcomplexbutgoodresources)3.community clientship(medicalproblemnotcomplexandpoorresources) 4. network clientship (medical problem complex and poor resources).Identifyingtheclientshipprofileofpatientsguided their(multidisciplinary)caretrajectoriesandoptionsforself- management.

describedinTextBox1.Thisprogram,aswellasavisitedprogram fromtheValenciaregion,alsoillustrateshowindividualcareplans couldtakepatients’resourcesintoaccount,seeTextBox1.

3.2.2. Involvinginformalcarers

In46programsitwasreportedthatinformalcarerswereatar- getgroupofthecareprogram.Informal carerswerespecifically addressedasco-clientsin22 programs.Anexampleof suchan approachwasfoundinthevisitedBelgianSOM+project(“Tailored CooperationResultsina‘plus”’),asubprogramofthePROTOCOL 3 program, see Text Box 2for further details [34]. In 30 pro- gramsinformalcarerswereinvolvedasco-careproviders,which impliesthattheywereexplicitlyrecognizedaspartoftheteam ofcareprovidersaroundapatient.Theseinformalcarerscould, forinstance,havedirectcontactwithprofessionalstoclarifydaily careissues,asillustratedbythecaremodelforcomplexpatients intheValenciaRegion,seeText Box1[40].Nexttospecifically acknowledginginformalcarersasco-careprovidersand/orcooper- atingwiththemonaformalbasis,informalcarerswereconsidered supportersofpatients’ self-managementin63programs.Thisis illustratedbythevisitedSOM+projectasdescribedinTextBox2.

68 65 59 54 52 49 48 45 45 34 31

0 20 40 60 80

Inadequate knowledge/skills of patients in self-management Lack of time of care providers Inadequate funding Inadequate support of patients Inadequate support of informal carers as co-care providers Inadequate knowledge/skills of care providers regarding patient

involvement/centeredness

Inadequate collaboration between care providers Inadequate support for care providers Lack of a clear managerial vision/strategy on patient

involvement/centeredness

Negative attitudes of patients Negative attitudes of care providers

Fig.2. Reportedbarrierstoapatient-centeredapproach(percentages);N=112programs(multipleresponseswereallowed).

Box2:Illustrationofhowtoinvolveinformalcarers ThevisitedSOM+project(“TailoredCooperationResultsina

‘plus”’)aimedtosearchforanddevelopnewalternativemodes ofsupportivecareandguidanceforfragileelderlypeople,in ordertoenablethemtokeeponlivingathome.Informalcare- giversareactivelyinvolvedinmakingcarearrangementsthat aretunedtotheindividualneedsandprioritiesofthepatients andtheirinformalcaregivers[34].Participantsand/ortheir informalcaregiversarepresentattheinitialmultidisciplinary meetingwhenthedraftcareplanisdiscussed.Inthisspecific projecttheburdenofcarethatwasexperiencedbyinformal carer(s)wasassessedaspartofthetotalneedsassessment of eligible patients [34]. Besides that, informalcarers were involvedinthedevelopmentofpatients’individualcareplans, whichincludedself-managementactivitiesactivelysupported bytheirinformalcarer(s)[34].

Box3:Illustrationofcarecoordination

InthevisitedGesundesKinzigtalprogramtheGPisthemain care provider and patients are free to choose their physi- cian,whichisnamed‘doctoroftrust’,actingasahealthcare coach.Theintroductionofanewprofessionalrole(“coordina- tor”),whowillcoordinate thecareprocessandsupportthe workof theGP, iscurrently indevelopment.TheGesundes Kinzigtal program implemented EHRs to support coordina- tionofcare,multidisciplinarycollaboration,transparencyand improvementinthequalityofcare.However,ittookmorethan fiveyearstoimplementsharedEHRs[38],whichindicatesits complexity.The sharedEHR,which wasintegrated intothe informationsystemofallparticipatingphysicians,isnowused byphysiciansandothercareprovidersinvolved,suchasout- patientnursingcareservicesandhospitals.Itwasemphasized intheinterviewsduringthesitevisitthattheimplementation ofthesharedEHRssystemcouldonlybeachievedonthebasis ofprofoundmutualtrustamongproviders.

3.2.3. Coordinationofcareandmultidisciplinarycollaboration In80programsimprovingcoordinationofcarewasoneofthe mainobjectives.Tocoordinatecarethreedifferentrolesofacare providercouldbedistinguished.First,theroleofthe‘trusteddoc- tor’,asimplementedinthevisitedGesundesKinzigtalprogram,see TextBox3[38].In73programsforeachpatientonespecificcare

providerwasappointedtotakecareofthecommunicationwith thepatient.Second,acarecoordinatorisneededtomakesurethat carefromdifferentcareprovidersdoesnotoverlaporleavegaps.

Incountrieswithastrongprimarycaresystemthisrolemaybeful- filledbyageneralpractitionerorpracticenurse.Incountrieswith adifferenthealthsystem,othercareproviderscouldtakethisrole.

InthevisitedBulgarianregionalNPO“Diabeticcare”thiscoordi- natingroleisforinstancefulfilledbyvolunteers[35].Athirdrole istheroleofcasemanager.Casemanagementismainlyofferedto complexpatients,asforexampleintheprogramoftheValencia Region,seeTextBox1[40].

In 88 out of the 112 programs improving multidisciplinary collaboration was one of the main objectives. Furthermore, in 77 programs multi-professional care groups were established.

However,thesemulti-professionalcaregroupsweremostoften establishedwithinoneorganizationanddidnotinvolveprofession- alsfromotherorganizations.Inonlyfewprogramsprofessionals frombothhealthandsocialserviceswereinvolved,whereaspeople withmultimorbidityoftenneedcarefrombothsectors.Mergingof differentunitswithinorganizationsandmergingofdifferentorga- nizationsweretheleastfrequentlyreportedtypesofcollaboration, respectivelyin21and25programs.

In44 programsa digitalcommunicationsystemwasusedto support communication betweencare providers, suchas video conferenceswithcareproviderstoexchangeinformation.Intwo programs shared electronichealth records(shared EHRs) were implemented,aspartoftheStrategyforChronicCareoftheValen- ciaRegionandoftheGermanGesundesKinzigtalprogram.Both programswerevisitedandthelatterisdescribedinTextBox3.

3.3. Barrierstoprovidepatient-centeredcare

Anumberofbarrierstoadoptamorepatient-centeredapproach wasreportedinthesurvey(seeFig.2).Barrierswereperceivedon thesideofthepatients,butalsoonthesideofthecareprofessionals andattheorganizationallevel.Forinstance,inadequateknowledge andskillsofpatientswasreportedasabarrier,butalsoinadequate knowledgeandskillsofcareprofessionals.Attheorganizational level,alackofmanagerialvisionandalackoftime,forinstancedue toinflexibilityofthecaredeliverysystem,werereportedasbarri- ers.Thesefindingsillustratethattoimprovepatient-centeredness, barriersatseverallevelsofthecaresystemneedtobeaddressed.

4. Discussion

Thispaperprovidesinsightintheextenttoandwaysinwhich patient-centeredcareiscurrentlyshapedinintegratedcarepro- grams for people with multimorbidity in European countries.

We found that programs use various methodologies and tools toinvolvepeoplewithmultimorbidity indecision-making con- cerningtheircareortreatment,andthatprogramsoftendevelop individualcare plans togetherwith thesepatients and/ortheir informal carers.Furthermore, inspiring examples exist on how informalcarerscouldbeinvolved,bothasco-clientsandco-care providersinthecareforpeoplewithmultimorbidity.Besidespos- itivedevelopments,ourfindingsalsoimplythatthereisstillroom for improvement when it comes toproviding patient-centered caretopeoplewithmultimorbidity.The112programsthat we includedinthisstudycouldbeconsideredforerunners.Yet,dur- ingthe developmentof most programs patientsthemselves or theirrepresentativeswerenotinvolvedoronlytoalimitedextent;

havingmultimorbidpatientsortheirinformalcarersinvolvedas co-designersofthecareprogramisstillrare.Furthermore,infor- malcarerswerenotexplicitly involved asco-clientsor co-care providersinmostprograms.Inadditionmultidisciplinarycollab- orationseemsstilldifficulttoachieve.Previousresearchonthe implementationof integratedcare shows how complexit is to achieve[55,56].Theoryonimplementingchangesincareorgani- zationslearnsthatittakesalotoftimebeforechangesareactually adoptedandthatdifferentphasesneedtobepassed[57].Thefind- ingsofthisstudyindicatethatwearecurrentlyinthephasewhere thereisawarenessoftheproblem,insomecountries/regionsmore thaninothers,andfirstinitiativestochangetheorganizationand deliveryofcarearebeingdeveloped.Thismeanswearestillatthe verybeginningofthistransformationprocess.

Thefindingsalso provideinsight intobarriersfor theprovi- sionofpatient-centeredcare.Inadequateknowledgeandskillsof patientswasmostoftenperceivedasabarrier.Thisimpliesthat patientempowermentandeducationneeds(more)attentionwhen implementingpatient-centeredcareformultimorbiditypatients, forinstance byputting (more) effortin informing patientsand supportingtheirself-managementskills.Furthermore,lackoftime andfundingareconsideredimportantbarriers,whichshouldbe takenintoaccountwhendevelopingpoliciestoenhancepatient- centeredcare.Itisnotsufficienttohavecareprovidersthatare willingtomakeachange;thecaredeliveryprocessneedstobe adaptedbymovingawayfrom‘onesizefitsall’caretocarethat istailoredtotheneedsofpatients,bothwithrespecttothefre- quency,thecontentandthetypeofpatient-careprovidercontacts (forinstance,somepatientsmightprefere-consultationsinsteadof face-to-faceconsultations).Itisimportanttoaddressthefactthat thesebarriersweremostlylistedbyprogrammanagersandnotby involvedcareproviders.Careprovidersmightbemorelikelytolist thelackofmanagerialvisionandsupportasabarrier.Furthermore, patientsmightmentionevendifferentbarriersthantheonesthat wereidentifiedinthisstudy.

TheICARE4EUprojectcontainssomelimitationsthatmighthave limitedtheinsights thatwe obtained. In thefirstplace,not all programscouldbevisited. Therefore, insight intohow patient- centeredcareisgivenshapeinpracticewaslimited,sinceformost programswehad torely exclusivelyonsurvey data.Neverthe- less,theeightsitevisitssubstantiallyincreasedourunderstanding inhowthehealthandsocialcaresystem(s)andotheraspectsof thelocalcontextimpactonthedevelopmentofpatient-centered multimorbiditycareatthelocallevel.Second,mostprogramshad notbeenevaluatedsystematically(yet),whichmakesitdifficultto drawanyinferenceswithrespecttotheirsuccessfulnessinimprov- ingpatient-centeredness.Third,fortheidentificationofrelevant programsinEuropeancountrieswehadtorelyoncountryexperts.

Forsomecountriesitwasdifficulttofindacountryexpertorganiza- tion,althougheventuallywewereabletofindoneinallcountries.

Countryexpertsdidnotalwayshaveacompleteoverviewofall initiativesintheircountries,especiallyincountrieswithdecentral- izedhealthsystems.Fourth,theinsightsasdescribedinthispaper arebasedontheresponsesofprogrammanagers.Experiencesof healthcareprovidersandpatientsmighthaveprovideddifferent insights.

5. Conclusion

AlthoughinspiringintegratedcarepracticesinEuropeancoun- triesexistthatalladdresssomeaspectsofpatient-centerednessin thewaytheyprovidecaretopeoplewithmultimorbidity,thereis roomforimprovement.Futureintegratedcareprogramsthattarget peoplewithmultimorbidityneedtosupportpatientinvolvement inthedevelopmentofindividualcareplans,tailorcaretotheneeds ofspecificpatientgroups,explicitlyinvolveinformalcarersasboth co-clientsandco-careproviders,andestablishmultidisciplinary collaborations,ideallyacrosssectors.Anotherrecommendationis toinvestinsystematicevaluationsofintegratedcareservicesfor peoplewithmultimorbidity,inordertosupportpolicydevelop- mentandfurtherimplementationofgoodpractices.

Funding

Thispublicationarisesfromtheproject‘Innovatingcareforpeo- plewithmultiplechronicconditionsinEurope’(ICARE4EU),which ranfrom2013to2016andwasco-fundedbytheHealthProgramme 2008–2013oftheEuropeanUnion.Wewishtothankallcountry expertswhocontributedtotheICARE4EUproject.

AppendixA. Supplementarydata

Supplementarydataassociatedwiththisarticlecanbefound,in theonlineversion,athttps://doi.org/10.1016/j.healthpol.2017.10.

005.

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