Building ground for didactics in a patient decision aid for hip osteoarthritis. Exploring patient-related barriers and facilitators towards shared decision-making
Espen Andreas Brembo
a,b,*, Hilde Eide
a, Mirjam Lauritzen
c, Sandra van Dulmen
a,d,e, Jürgen Kasper
faScienceCentreHealthandTechnology,UniversityofSouth-EasternNorway,Papirbredden-DrammenkunnskapsparkGrønland58,3045Drammen,Norway
bDepartmentofBehavioralSciencesinMedicine,UniversityofOslo,DomusMedica,Sognsvannsveien9,0372Oslo,Norway
cCentreforSharedDecisionMaking,UniversityHospitalofNorthNorway,HansineHansensveg67,9019Tromsø,Norway
dDepartmentofPrimaryandCommunityCare,RadboudUniversityMedicalCenter,Nijmegen,theNetherlands
eNivel(NetherlandsInstituteforHealthServicesResearch),Otterstraat118-124,3513CR,Utrecht,theNetherlands
fDepartmentofNursingandHealthPromotion,OsloMetropolitanUniversity,Pilestredet46,0167Oslo,Norway
ARTICLE INFO
Articlehistory:
Received25June2019
Receivedinrevisedform31January2020 Accepted3February2020
Keywords:
Osteoarthritis Patientpreference Practiceimprovement Shareddecision-making Patientdecisionaids Theoryofplannedbehavior Qualitativeresearch
ABSTRACT
Objective:Theaimofthepresentstudywastoexplorepatient-relatedbarriersandfacilitatorstowards shareddecision-making(SDM)duringroutineorthopedicoutpatientconsultationsaspartoftheprocess ofdevelopingapatientdecisionaid(PDA)forpatientswithhiposteoarthritis(OA).
Methods:Consultationscomprisingnineteen hipOApatientsreferredtoanorthopedicsurgeonfor treatmentdecision-makingwereobserved,audiorecordedandtranscribed.Iterativethematicanalysis proceeded,basedonataxonomyofgenericpatient-relatedbarrierstowardsSDMgroundedintheTheory ofPlannedBehavior(TPB).
Results:Atargetedtaxonomyprovidedastructuredoverviewof26factorsinfluencinghipOApatients’ intentiontoengageinSDM.Patients’perceivedabilitytochangetheagendaofthevisitemergedas seminalfactorandwasaddedtothegenerictaxonomy.
Conclusion:UsingaTPB-basedtaxonomy,wewereabletoidentifyandstructuregenericandcontext specificSDMbarriers.Addressingpatients’communicationself-efficacyshouldbeincludedasdidactic featureinPDAs.
Practiceimplications:PDAsforhipOAshouldbedesignedforthebroadspectrumofdecision-making support needs occurring throughout the continuum of the disease. The provided taxonomy may contributeasguidancewithinimplementationstrategiesthataimtosupportpatients’intentionsto engageinSDM.
©2020TheAuthor(s).PublishedbyElsevierB.V.ThisisanopenaccessarticleundertheCCBYlicense (http://creativecommons.org/licenses/by/4.0/).
1.Introduction
Worldwide, osteoarthritis (OA) represents a major cause of chronicmusculoskeletalpainandphysicaldisability[1].Decision- makinginOAtreatmentrequiresactiveinvolvementofpatientsfor manyreasons.Duetothepoorassociationbetweenradiographic evidence and the individual experience of symptoms [2], the patients’burdenoflivingwiththisdiseaseisdifficulttoconsider
fromthephysician’sviewpointalone.TreatmentoptionsforhipOA rangefromeducation,physicaltherapy,pacingofactivities,weight reduction and pharmacological treatment to invasive surgery involvingtotalhipreplacement(THR)[3–5].Withregardtotheir impact on lifestyle, and in particular the potentially long timeframeswithinwhichsuchdecisionscanbemade,allofthem areconsideredsensitivetoindividualpreferences[6,7].Decisions pertinent tothe differentphases of thehip OAcontinuum [8]
shouldthereforepredominantlyrelyonpatientpreferences,rather than recommendationsfrom medicalguidelines alone. Amajor challenge is, however, the identification and optimaltiming of appropriate decisions [9,10], and how toadopt communication strategiesthatpromoteinformedchoice[11].
Shareddecision-making(SDM)isamethodforstructuringthe process where clinicians and patients share the best available
* Correspondingauthorat:UniversityofSouth-EasternNorway,PostBox7053, 3007Drammen,Norway.
E-mailaddresses:Espen.Andreas.Brembo@usn.no(E.A.Brembo), Hilde.Eide@usn.no(H.Eide),Mirjam.Lauritzen@unn.no(M.Lauritzen), S.vanDulmen@nivel.nl(S.vanDulmen),Jurgen.Kasper@oslomet.no(J.Kasper).
https://doi.org/10.1016/j.pec.2020.02.003
0738-3991/©2020TheAuthor(s).PublishedbyElsevierB.V.ThisisanopenaccessarticleundertheCCBYlicense(http://creativecommons.org/licenses/by/4.0/).
ContentslistsavailableatScienceDirect
Patient Education and Counseling
j o u r n a l h o m e p a g e : w w w . e l s ev i er . c o m / l o c a t e/ p a t e d u c o u
evidenceon thelikely benefits and harms of each option, and where they negotiate how those options fit the patient’s preferences [12]. Makoul and Clayman describe nine essential elementsthatmustbepresentforpatientsandproviderstoengage intheprocessofSDM[13].Table1showssixstepsderivedfromthe MultifocalApproachtoSharinginSDM(MAPPIN’SDM,items1–6) [14],whichhasbeenprovenasthemeasurementinstrumentthat bestcoversthenineessentialSDMelements[15].
ManystepshavebeentakentoimplementSDMinternationally, but there is still an evident gap between aspiration and daily clinicalpractice[16].Themostcitedbarriershealthcareproviders experienceinclude1)timeconstraints,2)lackofagreementwith theapplicabilityofSDMtothepatient,or3)totheclinicalsituation [17,18].Patients’capacitytoparticipateinSDMdepends ontwo key factors: knowledge and power [19]. Knowledge refers to treatmentoptions, and about personal values and preferences.
Powerreferstothepatients’perceivedcapacitytoinfluencethe decision-makingprocess.Reviewingthecurrentevidence,thereis a lack of studies that exclusively explore decision-making for patientswithhipOA.
Thisstudycontributestothedevelopmentofapatientdecision aid(PDA)tosupporthipOAtreatment decisionsguidedbythe Decision Aid Factory (DAfactory) [20]. The DAfactory is an overarchingconceptprovidingguidelinestodevelopandimple- mentSDMintheclinicalpractice;amongstwhichadetailedguide todevelopPDAscomplyingwithTheInternationalPatientDecision AidStandards(IPDAS)Collaboration[21]andapplyingtheTheory ofPlannedBehavior(TPB)[22]inthedesignofdidacticstailoredto particularpatientgroups.Noempiricalstudieshaveyetdescribed andreportedfindingsfromthisnewandinnovativetheory-based method.
The aim of the present study was to explore barriers and facilitatorsinfluencinghipOApatients’capacityandopportunities toengageactivelyinSDM.Asecondaryaimwastodeterminethe utilityoftheobservationmethodprovidedbytheDAfactory.Two researchquestionswereaddressed:1)Howarepatientsinvolved indecisions relatedtotreatmentof hipOA? 2)Whichpatient- relatedfactorsfacilitateorimpedeSDMinhipOA?
2.Materialandmethods
2.1.Designandsetting
The study had an observational design allowing for theory driven in-depth investigation of real OA decision-making
processes taking place at an orthopedic outpatient clinic. The chosen method intended to support ecological validity by capturingtheimmediatecommunicationchallengespatientswith hipOAexperienceduringshortoutpatientconsultations.Aguiding principlewastogetascloseanddirectinsight intotheongoing communication as possible, without affecting it by potentially invasivepresence.
2.2.Participantsanddatacollection
Weintendedtoobserveandaudiorecordabout20outpatient consultations with orthopedic surgeons and cognitively unim- pairedpatientsconsideringa decision for primaryhipOAwith more than one treatment option. In cooperation with an orthopedic outpatient clinic at a Norwegian local hospital, we approachedeligibleparticipantsbyattachinganinformationand consentlettertothescheduledappointmentletter.Aconsecutive samplingprocedurefolloweduntiltherequiredsamplesizewas achieved.
Data wereobtainedthrough direct observation bythemain researcher (EAB) and audio recording. At the time of data collection, EAB had theoretical and scientific knowledge about SDM and underwent comprehensive observation training and supervision by JK, who is an experienced SDM researcher and trainer. We conducted two preparatoryobservation sessions to become familiar with the observation guide and calibrate the observational lens. Direct observation enabled insight into structural features and the non-verbal events, whereas audio recordingallowedforsubsequentcomprehensivequalitativedata analysis.Informationaboutpatients’ageandsexwascollectedas wellasextentofsurgeons’ previouscommunication trainingin SDM.
2.3.Descriptionofobservationmethodandanalysis 2.3.1.Observation
An observation guide included instructions about how to tune in andreveal relevantevents. Each observation session was guided rigorouslyby using imagination of an ideal SDM process as a sensory corridor. This would entail that the communicationstrategiesappliedconcurredwithessentialSDM elements[13],andatapracticalskillslevel,thesixSDMsteps[14].
Theobserversoughtidentificationwiththepatientandmadefield notes based on projections occurring from this state as data materialforfurtheranalysis.Recognitionofrelevanteventsresults fromcontinuouscomparisonoftheidealwiththeactualprocess andidentificationofeitherdivergenceoraccordance.Eventsare utterances or any other kind of communicative behaviors, includinglackofbehaviorwhereitwouldhavebeenappropriate.
In order to relate in-depth observation through the patient’s perspective,theconsultationsweredescribedaccordingtotypical structural consultation features (e.g.diagnosis and assessment, negotiation of alternatives and making a treatment decision) and the extent and manner of the patient’s involvement in decision-making.
2.3.2.TaxonomyofbarrierstoSDM
We applied a taxonomy of a priori categories representing generic patient-related barriers towards SDM as basis for a combineddeductiveandinductive analyticapproachtoidentify and structure distinctive events. This classification is based on corresponding observation sessions as part of DAfactory PDA developments in other clinical contexts. The taxonomy is structured according to the following three TPB constructs, proposedtodetermineanindividual’sintention(i.e.,anindication ofaperson’sreadiness)toperformaparticularbehavior[22].
Table1
SixSDMstepsaccordingtotheMAPPIN’SDMobserverinstrument.
1.Definingproblem Drawattentiontoaconcreteproblemas onethatrequiresadecision-making process
2.Keymessage Indicatethatfromamedicalpointofview thereismorethanonewaytodealwiththe problemandclarifywhyitisuptothe patienttoweighuppossibleconsequences 3.Discussingoptions Discusstheprosandconsofthedifferent
options,including“doingnothing”when applicable
4.Expectationsandworries Exploreexpectations(preferences)and concerns(fears)abouthowtomanagethe concreteproblem
5.Indicatedecision Selectionofaninformedandpreference basedoption,includingdefermentwhen applicable
6.Follow-uparrangements Arrangementsabouthowtoimplementthe decisionandhowtoevaluateit
Appliesto allsteps: Ensure mutualunderstandingand adaptcommunication strategyaccordinglythroughouttheconversation.
1)Attitudetowardperformingthebehavior:thedegreetowhicha personhasafavorableorunfavorableevaluationorappraisalof thebehavior.
2)Subjectivenorm:theperceivedsocialpressuretoperformor nottoperformthebehavior.
3)Perceivedbehavioralcontrol:theperceivedeaseordifficultyof performingthebehavior,assumedtoreflectpastexperienceas wellasanticipatedimpedimentsandobstacles.
Moreover, the generic taxonomy is organized across three abstractionlevels;thelevelofthethreeTPBconstructs,thelevelof subcategoriesprovidingabstractedgroupsofbeliefsandthelevel ofamalgamatedempiricaldescriptions.Fig.1displaysamodified TPB-modelincludingeightmainlevelaprioricategories.
2.3.3.Qualitativeanalysis
Thedatawasanalyzedbytworesearchers(EABandJK)usingan iterative thematic approach inspired by template analysis(TA) [23]. This involved repeated shifting between deductive and inductive approaches. TA allows for the definition of ‘a priori’ codes,representedbythegenerictaxonomyinthisstudy.NVivo11 qualitativedataanalysissoftwarewasusedfordatamanagement [24]. Any divergence regarding recognition and allocation of essentialeventswasresolvedbydiscourse.Theanalysisconsisted ofthreemainsteps:
Step1:Theaudiorecordingsweretranscribedsoonafterthe observationsessions.Fieldnotesandmemoryrecallwereusedto identifypotentiallyimportantsequencesofevents.Theseevents werecarefullyinterpretedandthematicallylabeledinaccordance withthemainandsubcategorylevelsofthegenerictaxonomy.
Step 2: Through iterative processes, additional events were identifiedbydeterminingapplicabilityofexistingcategoriesofthe generictaxonomy.Amalgamatedempiricalexamplesrelevantto hipOApatientswereconstructed,leadingtowardsatargetedTPB taxonomyrepresentingbarriersspecificforhipOApatients.
Step3:Arefinementprocessintendedtodetermineifanynew elementswereapplicableandlastly,toconfirmthefinaltaxonomy.
2.4.Ethicalconsiderations
TheNorwegianCentreforResearchDataapprovedthestudy.
The study complies with the ethical standards and principles
statedin theHelsinkideclaration[25].Allparticipantsreceived both writtenandoral informationaboutthestudyandpatients gaveinformedwrittenconsent.
3.Results
3.1.Patientcharacteristicsanddecisionoutcomes
Of the 20 patients approached, 12 women and 7 men agreedtoparticipate.Theyoungestwas40,theoldest84years old. The consultations took place on two different days, and lastedanaverageof22min(range11–40).Twomalesurgeons were involved and had not received any previous SDM communication skills training. Nine patients ended up with thedecisiontoundergoTHR.Theremainingpatientswereeither scheduled forfollow-upafterfurtherdiagnostic interventions (n=3),consideredmedicallyunfitforsurgery(n=1)oradvised to postpone surgery by optimizing conservative treatment (n=6).Table2summarizespatientcharacteristicsanddecision outcomes.
3.2.Structuralfeaturesoftheconsultations
Theconsultationshad similarcontentand followeda logical structurearisingfromthegivencontext,whichincludedconsid- erationofthepatients’allocationwithinthediseasecontinuum, and thespecific natureof OA(Fig. 2).Notably, each outpatient consultation was merely representing one sequence within a comprehensiveandlongitudinaldecision-makingprocess,which overtimepotentiallyinvolvesseveralconsultationswithdifferent healthprofessionals(HPs).
Thesurgeonsseemedtoregardtheirtaskmoreorlessexplicitly to(just)consideringthemedicalindicationforprostheticsurgery.
AsillustratedinFig.2,thisdiagnosticdecision-makingproceeded simultaneouslywiththemoreimplicittreatmentdecision-making process, which is concerned with reaching the most optimal treatmentdecision.
Inoursample,phaseoneispredominantlyusedtoconfirman OA diagnosis and to discuss its individual manifestation with regardstoADLandqualityoflife.Thishappenedbyconsideration ofavailableinformationinthereferraldocument,X-rays,history takingandafocusedclinicalassessment.
Fig.1.ModifiedTheoryofPlannedBehaviordiagram,includingthemaincategoriesofthetaxonomyofpatient-relatedbarriers/facilitatorstowardsSDM-behavior.
Inphasetwo,informationaboutthesurgicaloptionwasinmost cases given priority. Depending on individual characteristics, engagementandargumentsfromboth partiesvaried.In caseof suspicionofotherpossiblereasonsforthetroublesomesymptoms, thesurgeonschallengedthepatient’smotivationforsurgeryby puttingmoreemphasisonexplainingtheassociatedrisks.Ifthe medicalindicationseemedclear,thesurgeonsprioritizedencour- agementofthepatientbyemphasizingpossiblebenefits.Mutual engagementincriticalnegotiationofbenefitsandharmsappeared influencedbyvaryingattitudesonthepatients’side.
Inphasethree,thepatients’subjectiveexperienceandconcerns werediscussedexhaustivelyandmedicaldecisionsfororagainst THRoradditionaldiagnostictestsweremadeclear.Inaddition,the consultationsincludedfollow-upplans,andsometimesinstruc- tionsaboutfurtherevaluationofthedecision.Bothpartiesengaged incommunicativeactivitiestoreassuremutualunderstandingin thisprocess.
3.3.FacilitatorsandbarrierstowardsSDM
We identified 25 of the 31 subcategories of the generic taxonomyandincludedoneadditionalbarrierrelatingtopatients’ communication self-efficacy (marked with bold). This barrier occursformostpatientsinthissamplegiventhesituationthattwo communicationprocesseshappensimultaneouslyasdescribedin
theprevioussection.Thelatterbarrierwasincludedintherevised version of the generic taxonomy yielding 32 subcategories (Table3).
3.3.1.Patients’attitudestowardsSDM-behavior
Thisthemereflectspatients’awarenessofoptionsandthata decision must be made, possession of relevant knowledge, information andinformation processingskills,understandingof what SDM entails in practice, and expectations of potential outcomesofSDM.Weidentified14ofthe18factorsrelatingtothis category, and provided amalgamated empirical examples. A commonnotionwasthatpatientsseemeduninformedaboutOA and the available choices. This was based on the tendency of pursuing a passive role, implying an understanding that their contributionintothedecision-making processwas primarily to answerthesurgeons’questions.Inaddition,theirprimaryagenda forthevisitwashardlyeverdiscloseddirectlybythepatients.In thesecases,thepatientstendedtofollowthesurgeon’slead.This apparentabsenceofinitialtalkaboutpersonalgoals,andhowthey may relate to the available choices, seemed to limit patients’ opportunities for active involvement. Previous experiencewith orthopedic consultations and a history of rejection for surgery seemedtoinfluencepatients’attitudesandfacilitateinvolvement.
Afemalepatient(P3)hadpreparedfortheconsultationbybringing documentationfrompreviousspecialistandprimarycarevisits.
Table2
Patientcharacteristicsanddecision-makingoutcomes.
ID Age Gender Decision-makingoutcomes
1 40-44 Male PostponeTHR.Follow-upinsixmonths.Physiotherapy,weightlossandincreasedoseofEtoricoxib.
2 80-84 Female NotmedicallyfitforTHR.Increasepainmedication.
3 50-54 Female AcceptedforTHRandplacedinthequeue.Weightlossandsmokingcessation.
4 75-79 Female PostponeTHR.Follow-upinsixmonthsafterlumbarMRIscan.Continuewithphysiotherapy.
5 80-84 Female PostponeTHR.Follow-upinthreemonths,continuephysicaltherapyandstartEtoricoxib.
6 65-69 Male AcceptedforTHRandplacedinthequeue.
7 75-79 Female AcceptedforTHRandplacedinthequeue.Smokingcessation.
8 70-74 Female AcceptedforTHRandplacedinthequeue.Smokingcessation.
9 65-69 Female PostponeTHR.Follow-upinthreemonthsafterMRIscan.Cortisoneinjectionfortrochanterbursitis.
10 75-79 Female AcceptedandagreedtimeforTHR.Postoperativephysiotherapy.
11 65-69 Female AcceptedandagreedtimeforTHR.Smokingcessation.
12 60-64 Male AcceptedforTHRandplacedinthequeue.Weightloss.
13 60-64 Female RejectedforTHR.Follow-upafterhipMRIscan.
14 70-74 Male PostponeTHR.Follow-upinsixmonths.Cortisoneinjectionfortrochanterbursitis.
15 70-74 Female PatientdonotpreferTHR.Treatmentasusual.
16 55-59 Male RejectedforTHR.Follow-upofback-painafterlumbarMRIscan.
17 55-59 Female AcceptedforTHRandplacedinthequeue.Preoperativephysicalexercise.
18 50-54 Male AcceptedforTHRandplacedinthequeue.
19 55-59 Male RejectedforTHR.Follow-upbygeneralpractitioner.
Fig.2.OverviewofthetypicalcourseofanorthopedicoutpatienthipOAconsultation,demostratingtwooverlappingdecision-makingprocesses.
Table3
RevisedDAfactorytaxonomyofpatient-relatedbarrierstowardsSDM.
Maincategories1–4representattitudetowardthebehavior,5–6subjectivenormsand7–8perceivedbehavioralcontrol.Level1andlevel2categoriesaregeneric,whereas theempiricalexamplesatthethirdabstractionlevelarecontextspecific.Elementnotidentifiedinthisclinicalcontext(italics).Newelementofthegenerictaxonomy(bold).
Fromtheverystart,shewasstandinguprightandengagedactively duringthe initialhistory taking,and her agendawas explicitly stated.
O:Whatdoyouthinkisthesolutionforyourproblem?
P:Toreplacemyhip!
O:Andyouareconvincedaboutthat?
P:Mm,yes!
Fromthispoint,thesurgeonworkedwiththepatienttomake herunderstandtheincreasedrisksassociatedwithsmokingand obesity.However,thisdidnotchangethepatient’smotivationto undergosurgery,asshearguedthatprevioussurgerieshadbeen successfuldespitesmokingand thatotheroverweightpeoplein hersocialnetworkhadundergonehipsurgery.Withregardtothe taxonomy,this illustrates a patient expecting a predetermined decisiontobefinal.Furthermore,theproceedingdialogueshows signsofstrongconvictionconcerningprognosis,whichinturnmay reveal unawareness of what an SDM process could gain. The patientseemstopursuewhateverpain-relievingtreatment,and combinedwitha convictionthatsurgeryistheonlyoptionthat mayhelphertoachievethis,shemayblockoutanyinformationor argumentsthatmaychallengethisconviction.
3.3.2.SubjectivenormsinfluencingSDM-behavior
Thisthemereflectsthepresenceorabsenceofinfluencefrom significantothersonthedecision-makingprocess.Sixoftheeight generic barriers were identified. The surgeon’s professional judgment about the surgical indication was directive for the overalldecision-makingprocess,andmanyofthepatientsseemed totrust this judgmentuncritically. Excessive trust or uncritical acceptanceofthesurgeons’advicemayleadtopassivebehavior, mask patients’ preferences, prevent informed decision-making, andthus act asa barrier towards SDM.The followingexample illustratesthisfinding.Amalepatient(P1)inhisfortieswastoldby thesurgeonattheverybeginningoftheconsultationthatsurgery wasoutofthepicture,evenbeforeelicitingthepatient’sagendafor thevisit.
O:Therearesomesignsofwearandtearonthepictures[P:Yes].
But there isn’t... there is still some cartilageleft [Yes].And that... thatisagoodthing–right?[Yes]Youaresimplytooyoung forahipreplacement[P:Yes,yes...].
Here,andinthefollowing,thepatientappearedtoacceptthe judgment of the surgeon without attempts to challenge his argumentsorconviction.
Another example (P10) illustrates how the surgeon’s initial judgment directly influenced the treatment decision-making process.Alternatives tosurgery werepracticallyruled out, and thefollowing information exchangecircled aroundthesurgical procedure and what to expect in terms of pain and physical functionoutcomes(i.e.notbalancedagainstthepotentialbenefit ofnon-surgicaloptions).
O:Itis... whenwereplaceyourhipjoint-becausethatisthe appropriate procedure for you now [P: Ok, mhm?]. It has progressedsomuch[P:Mhm],thatthereisnothingtodotofix it... wesimplyhavetoputinaprosthesis[P:Yes].Right?Ican almostsaythatevenbeforedoinganyexaminations.
Three patients had a family member present during the consultation. This seemed to facilitate more discussions and deliberationsaroundtreatmentalternatives.
O:Ithinkthatweshouldproceedwiththisplan,andthenwecan arrangeafollow-upwithacontrol[P:Mhm..].Thenwewillsee howitgoes[P:Yes].
Familymember:Yes,butIwanttomentiononething..Imean,you areverykeentospendtimeatthecabinduringthesummer[P:
Yes]..anditisnoteasyforyoutogetupthere-tostaythere..[P:No,
itisn’t].So,aslongasyouhavethecabinandwanttostaythere,it is...
P:Whatareyouthinking?
Family member: I think that you have this pain and trouble walking,andtogetaround..thatmakesitdifficultforyoutospend timethere..andthatissomethingyoureallywanttodo–tostay there..[P:Yes..]So,thatissomethingthatispartof theoverall consideration(Familymember,P5).
Giventhis apparentfacilitating effect,theabsenceof athird person who provides important perspectives relevant to the treatmentdecision-makingprocessmayactasabarriertowards SDM.
3.3.3.PerceivedbehavioralcontrolinfluencingSDM-behavior This theme represents patients’ perceived control regarding treatmentorcopingwiththeconsequencesfromtreatment,and communication self-efficacy. We added one barrier at the subcategory level of the generic taxonomy, and provided corresponding empirical descriptions of a total of six factors.
TreatmentforhipOAusuallyrequireslife-stylechanges.Arequest byotherstoengageinbehaviorchange-dependenttreatmentmay causeemotionalandcognitivedistressandconsequentlyinfluence theirperceivedcontrolbeliefsincommunicationwithamedical specialist.Feelingsofuncertainty,fear,shameorlowconfidence relatingtopreviousmanagementattemptsarelikelytoinfluence own ability or readiness to raise such personal and potential sensitiveissues.
Thepatient’sultimateconcernandreasontoseekadvicefrom an orthopedic surgeon is to determine the optimal treatment option.Thefollowingexampleshowsafemalepatient(P17)with twopreviousorthopedicoutpatientevaluations.Thepatientwas clearlyupsetabouthowherconditionaffectsherdailylife.
P:Itisreallybadatmosphereatourhouse,becauseIsimplylose controlwhenthispaincomes[O:Yes?].Andthatbothersme!Butif itturnsoutthatthereisnothingtodotoimprovemysituation- thenIjusthavetoacceptit,andI’llhavetofindwaystolivewith it...
O:Wehavediscussedthisonthebasisthatitmightbeaweak indicationtosupportadecisionforsurgery–becausethatiswhat theother(orthopedicsurgeons)havedecided.However,itisnot clearyetwhetherwearriveatthesameconclusion[P:Right,we willsee!].We’llsee,andmaybethereareotherthingsthatcanhelp.
Butnowourconcernistodetermineifyoushouldundergosurgery.
Thereareofcourseseveralotherthingsthatmighthelpyou[P:And thatisexactly?].Well... physiotherapyisoneoption,butalso other things that maybe your GP is just as good as me to consider... but whatIhavetofindout isthe questionofhip prosthesis[P:Mhm].Ifthatisasmartthingtodo... [P:Yes].
Inthisexample,thepatientrespondedtothesurgeon’sstatement thattheremightbeotherhelpfultreatmentoptionsbyaskingwhat specific treatment he means. The surgeon briefly mentioned physiotherapy asalternativetosurgery,butat thesametimeindicated thathis responsibilitywasmainlyto determineanindicationfor surgery.Nodetailsaboutpotentialbenefitsorharmsofnon-surgical optionswereprovided. Giventhissituation,the patientmayfeel disempoweredinchangingtheagendatoclaimbalancedinformation aboutallpossibilitiesthatmayhelpherproblem.
4.Discussionandconclusion
4.1.Discussion
This qualitative study of decision-making in orthopedic outpatient consultations yields important findings both with
regardtoresearchmethodsinthefieldofdecisionsupportandto theparticularneedsofpatientswithhipOA.Itisthefirststudy describingtheDAfactorymethodpurposedtoadaptdidacticsin PDAstospecificpatientgroups.UsingSDMasatheoreticallens, thisobservation-basedmethodprovedusefultoidentifypromi- nent factors affecting patients’ involvement into treatment decision-making.Moreover,applyingTPBtostructurethesefactors affirmed the existing generic taxonomy and refined a hip OA specific taxonomy used to inform development of patient narratives(videoswithpatientstories)inaPDApublishedrecently attheNorwegiane-healthplatformwww.helsenorge.no/samvalg.
A salientfocusin theconsultations concernedthediagnostic decisionwherethesurgeonmakesupjudgmentsaboutthemedical indication for prosthetic surgery. Communication around this question,however,blurredtheunderlyingdecision-makingprocess concerning the benefits and harms of all available treatment options.Asthefirstdecisionrepresentsapivotalmedicaljudgment fromthesurgeon’sside,thelatterguidesthepatient’sagenda,andis theappropriateone foran SDMprocess.Through theapparent overlapof two decision-making processes, patient involvement appearedprimarilyrelatedtothediagnosticconsiderationrather thanthecorrespondingtreatmentdecision-makingprocess,which accordinglypresentedasmoreimplicit.Nevertheless,someofthe observedfeaturesoftheongoingcommunicationwerecorrespond- ingtoessentialSDMelements[13],butasseenfromthepatients’ pointofview,itmightbechallengingtorealizewhenpersonalgoals andpreferencesareappropriatetoraise.
BecausehipOAhasalonglastingdiseasecontinuum,treatment decision-making is occurringat multiple time-points and with different people involved. Analysis of consultations in the secondary care setting therefore had to takeinto account that trueSDM is longitudinalin nature. Anadvanced stage referral mightforexamplehaveimpliedthatthesurgicaloptionwasthe onlyremainingrealisticalternativetoconsider.Hence,thechosen descriptiveratherthanjudginganalyticalapproachappearedtobe astrengthofthisstudy.
There are important limitations to consider such as, in particular,issuesrelatedtothechosendesignandtransferability of the findings. The current study includes only nineteen participantssituatedinonecontextwithtwoorthopedicsurgeons.
Thereis a need for further validation of the findings in other settings and by using adjuvant methods. Furthermore, as one researcherperformedthedirectobservationsonly,observerbias mighthaveinfluencedthefindings. Theproceduresduringdata collectionandanalysis, includingaudiorecording,analysisbya secondcoder,discussionsintheresearchgroupandthetheoretical guidancehave,however,improvedthereliabilityofthestudy.
Patients’opportunitiesand capacitytobecomeactivepartic- ipants in treatment decision-making is affected by several interrelated factors – the patient [19], the HPs [26] and the organization/system [27]. In terms of implementation of SDM throughtailoredPDAs,thereareargumentstotargeteachofthem.
However,this study is basedonthe assumptionof thepatient beingashareddecision-makerandfromthisviewpointinvestigates particularbarrierspatientsencounterintheirattemptstoactively engageintreatmentdecisions.Thisapproachseemstobecoherent withtheSDMconceptualideaoftheautonomouspatient.With regard to implementation of SDM, it is not yet clear whether approachingtheHPsorthepatientsismoreefficient.Itislikely thatcombinedapproachestargetingbotharemostpromising[28].
Wealsoknowthat strategies focusingonthepatientcanwork effectively, suchas thethree-questionmethod[29,30].Further- more,peopleexposedtoPDAs feelmoreknowledgeable,better informed,andclearerabouttheirvalues,andtheyprobablyhavea more active role in decision-making and more accurate risk perceptions[31].
4.2.Conclusion
Thepatientsinthisstudywereinvolvedquiteactivelyinthe ongoing communication, but more concerning the possible indication for surgery, and less about careful deliberations of benefitandharmsassociatedwithotheravailablealternatives.We foundthathipOApatientsfacesimilarbarrierstowardsSDMas thosepreviouslyidentifiedinotherpatientgroups.Yet,OApatients seem to find it particularly challenging to engage actively in treatmentdecision-makingwhenconsultationsareframedaround diagnosticdecisions.Theobservationmethodprovedfeasibleto identifypatient-relatedbarrierstowardsSDM.
4.3.Practiceimplications
Thecurrentstudyhascontributedtothedevelopmentofaweb- basedPDAforhipOAdecisionsaimedatsupportingSDMacross thehipOAcontinuum[8].Otherdevelopersofdecisionsupport toolscanadoptthemethodsusedtoinformthedevelopmentof PDAs.Moreover,thetaxonomyofSDMbarrierspublishedinthis studycanbeusefulforotherSDMimplementationstrategies.
Authorcontributions
EAB:studydesign,datacollection,transcription,dataanalysis and interpretation, drafting and editing the article. HE: study design,interpretationofdataandcriticalrevisionofthearticlefor intellectualcontent.MLandSvD:criticalrevisionofthearticlefor intellectualcontent.JK:studydesign,dataanalysisandinterpre- tation,andcriticalrevisionofthearticleforintellectualcontent.All authorsreadandapprovedthefinaldraft.
Funding
TheUniversityofSouth-EasternNorwayfundedthisresearch.
DeclarationofCompetingInterest
None.
Acknowledgements
Wewarmlythankthenineteenpatientsandthetwosurgeons forparticipatinginthisstudy.Wealsothankthesecretaryatthe orthopedicoutpatientclinicforhelpwithrecruitmentprocesses.
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