Research Paper
Is patient behavior during consultation associated with shared
decision-making? A study of patients ’ questions, cues and concerns in relation to observed shared decision-making in a cancer outpatient clinic
Anita Amundsen
a,*, Tone Nordøy
a,b, Kristine Emilie Lingen
c, Tore Sørlie
b,d, Svein Bergvik
caUniversityHospitalofNorthNorway,OncologyDepartment,Tromsø,Norway
bDepartmentofClinicalMedicine,UiT,TheArcticUniversityofNorway,Tromsø,Norway
cDepartmentofPsychology,UiT,TheArcticUniversityofNorway,Tromsø,Norway
dDepartmentofMentalHealthandAddictions,UniversityHospitalofNorthNorway,Tromsø,Norway
ARTICLE INFO Articlehistory:
Received19December2016
Receivedinrevisedform28September2017 Accepted2October2017
Keywords:
Cancer Communication Observationalstudy OPTION
Veronacodingscale
ABSTRACT
Objectives:Toexplorehowcancerpatientsactivelyparticipateinconsultationsbyaskingquestionsand expressingemotionalcues/concernsandtowhatextentthisisassociatedwithphysicianshareddecision making(SDM)behavior.
Methods:Thisobservationalstudyincludedaudiorecordingsof31primaryconsultationwithpatientsat theOncologyOutpatientClinicattheUniversityHospitalofNorthNorway.Thecontent(topics)and frequencyofhealthrelatedquestionsfrompatients/caregiverswereregisteredalongwithemotional cues and concerns (VR-CoDES) and observed shared decision-making (OPTION). Patient reported outcomesweremeasuredbeforeandoneweekaftertheconsultation.
Results:Onaverage,17(SD15)questionswereasked,and1.9(SD1.9)emotionalcuesandconcernswere expressedbypatientsperconsultation.Thequestionsmainlypertainedtotreatmentandpracticalissues.
ThemeanOPTIONscorewas12(SD7.9)andwasneitherassociatedwithquestionsnoremotionalcues andconcernsfrompatients.
Conclusion: Althoughpatients were active byasking questions, observed physicianSDM behavior measuredbyOPTIONwaslowandnotassociatedwithpatientbehaviorduringconsultation.
Practiceimplications:Furtherresearchonpatients’influenceonphysicianSDMbehaviorisneeded.
©2017ElsevierB.V.Allrightsreserved.
1.Introduction
Patient centered care is widely acknowledged as a central elementofhigh-quality health care[1] andeffectivephysician- patientcommunicationisassociatedwithimprovedhealthout- comeslikereducedlevelsofanxiety[2,3].Norwegianhealthcare legislationhasguaranteedpatientstherighttoreceiveinformation andtobeinvolvedindecisionsregardingtheirownhealth[4].One oftheassumptionsunderlyingshareddecision making(SDM)is that the provided information must be comprehensible and adapted to the individual patient [5]. Asking questions is an effectivewayforpatientstoreceive informationcustomized to meettheirneeds.
InaUKstudyof2331cancerpatients,themajoritypreferredto haveasmuchinformationaspossible,boththegoodandthebad [6].Patients’highestinformationneedhasbeenfoundtobeinthe timeperiodclosetowhenreceivingthediagnosis[7].Hagertyetal.
reportedthat98%ofpatientswantedtheirdoctortoberealistic, provideopportunitiestoaskquestions,andacknowledgethemas individualswhendiscussingprognosis[8].Thereisalsoevidence oftoday’spatientsbeingmoreactiveparticipantsinthemedical encounterwhenitcomestoaskingquestions[9].
The frequency of questions asked by patients varies across cultures and settings [10–12]. Whether or not the individual patient raise questions during their consultations with the physicianalsodependsonacomplexinterplaybetweenindividual factorsofthepatientandthephysician,aswellasthecontextofthe consultation. Previous research has found question asking associated with patients’ educational level [13] and level of anxiety [10]. Supportive talk and a partnership-building
* Correspondingauthorat:UniversitetssykehusetNordNorge,Kreftavdelingen, Postboks13,9038Tromsø,Norway.
E-mailaddress:anita.amundsen@unn.no(A.Amundsen).
https://doi.org/10.1016/j.pec.2017.10.001
0738-3991/©2017ElsevierB.V.Allrightsreserved.
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
communicationstylebythedoctormayfacilitatepatientinvolve- ment,aswellaspatientsexpressionsofworriesandconcerns.
Cancerpatientsmayexperienceemotionaldistressduringthe entire courseof treatment [14–18]. Worries may be expressed explicitlyasquestionsorconcerns,butalsoimplicitlyashintsor cues[19].Physicians’recognitionofpatientsdistressmayreduce anxietyandincreasesatisfaction[20].However,doctorstendtobe lessresponsivetopatients’emotionsthantotheirinformational needs[19].
SDMhasbeendefinedbyCharlesetal.asasetofprinciples, involvingatleasttheclinicianandpatient[21]:Bothpartiesshare information,bothpartiestakestepstobuildaconsensusaboutthe preferredtreatmentandanagreementisreachedonthetreatment toimplement.Nogoldstandardexistsforobjectivelymeasuring SDM.Thereisevidencethatpatientsaskingtargetedquestionscan influence physician behavior towards more SDM [22]. To our knowledge,nopreviousstudyhasexploredpatient’snaturalverbal behaviorintheformofquestionaskingandexpressionofcuesand concernsinrelationtoobservedSDM.However,itcanbeassumed thattheremightbearelationshipbetweenpatientsbeingactive participantsin theconsultationand thelevelof physicianSDM behavior. The purpose of this study was to examine how Norwegiancancer patientsactively participate in consultations byaskingquestionsandexpressingcuesandconcernsandwhat patientcharacteristicsdeterminethis behavior. Furthermore,to exploretowhatextentthisbehaviorisassociatedwithSDM.We hypothesized that more active patients (asking questions and expressingcuesandconcerns)weremoreinvolvedinSDMthan lessactivepatients.
2.Method
This study was part of a project exploring the effect of communicationaidsonquestionasking,SDMandpatientreported outcomes(anxiety/depression/quality of life)and includesdata fromthecontrolgroup.
2.1.Sample
Physicians and patients were recruited from the Cancer Outpatient Clinic at the University Hospital of North Norway (UNN).Thisoutpatientclinicreceivespatientswithvariouscancer diagnoses from the three northernmost counties in Norway, admittedforassessmentofoncologicaltreatment(chemotherapy, radiotherapyetc.).
2.1.1.Physicians
Physicians at the Oncology Department at UNN receive a minimum of one year of clinical training before seeing newly admittedpatientsattheOutpatientClinic.Physicianswhofulfilled thisrequirementwereinvitedtoparticipateandwritteninformed consent was obtained. Physicians involved in the design and implementationoftheresearchprojectwereexcluded(foursenior physicians).
2.1.2.Patients
Weaimedtohave30 participatingpatients. Newlyadmitted patientswererecruitedfromtheparticipatingphysicians’outpa- tientlistsintheperiodfromApriltoJune2014.Eligibilitycriteria included:Age18to75,Norwegianspeaking,andabletocomplete questionnaires.
AuthorAAidentifiedpatients,andeligiblepatientsreceiveda writteninvitationapproximatelyoneweekpriortotheirappoint- ment.Thosewhoagreedtoparticipatewhenphonedbythestudy nurse, met with her before the consultation to sign a written informed consent and complete the pre-consultation
questionnaire. The subsequent consultation with the physician wasaudiorecorded.Oneweekaftertheconsultation,thepatient receivedthepost-consultationquestionnairebymail.
2.2.Analysisofaudiorecordsofconsultation
Theaudio filesweretranscribed verbatimandthefollowing elementswerecodedfromthetranscripts:Questionsfrompatient/
caregiver,emotionalcuesandconcernsexpressedbythepatients along with physicians’responses and towhat extent physician SDMbehavioroccurred.Codingwasperformedbytwopsychology students.
2.2.1.Questionsfrompatients/caregiver
Amanualwasdevelopedtoensurecodingagreement.Patient andcaregiversquestionswerecodedinto14categories.
Table 1 displays the 14 categories of topics questions were codedinto.
Oneofthetwocoderscoded questionsineachconsultation.
Physicians’invitationtoaskquestionswascodedaseitherabsent, basicorextended,andwhetherithappenedinthefirst/middle/last partoftheconsultation.Basicendorsementwascodedwhenthe physician asked if the patient had any questions. Extended endorsementwascodedwhenthephysicianadditionallyempha- sizedtheimportanceofaskingquestions.
2.2.2.Emotionalcuesandconcerns
Patients’ emotional cues and concerns, and physicians’ responses were coded from the transcripts according to the Veronacodingdefinitionofemotionalsequences(VR-CoDES)[23]
and providerresponse(VR-CoDES-P) [24]. AuthorKLcoded the transcripts after completing training with training material providedat theInternationalAssociation forCommunicationin Healthcares’website(www.each.eu).Trainingwassupervisedbya memberofthegroupofdevelopersoftheVRCoDES(SB).Codingof eachexercisewassuccessivelydiscussedwiththesupervisoruntil thecodingwasinaccordancewiththerecommendedvaluesinthe training material. During the coding process, the coder and supervisormetregularlyandreviewedthecodinganddiscussed casesofuncertainties.
Duetothelimitedsampleofconsultationsandtherelatively low frequencyofemotionalcuesand concerns,thesubtypesof cueswerenotcoded(onlythefrequencyofevents).Inthecarefully monitored coding process, the majority of consultations were based on a coder and supervisor consensus, and inter rater reliabilitywasconsiderednotapplicable.
2.2.3.SDM
TheOPTIONscalemeasurestowhatextentphysiciansinvolves patients in SDM [25]. The scale includes 12 items evaluating
Table1
Displaysthe14codingcategoriesquestionswerecodedinto.
1. Whenandhowtoaskquestions
2. Diagnosis
3. Tests
4. Prognosis
5. Optimalcare
6. Multidisciplinaryteam
7. Treatmentoptions
8. Treatment
9. Costs
10. Sourcesofinformation
11. Relatives
12. Lifestyle
13. Practical
14. Other
physicianSDMbehavior.Allitemsareratedfrom0to4,where0 indicates absence of SDM behavior and 4 indicates excellent performance.
TheOPTION scalewas translated accordingtobest practice.
TwotranslatorsfluentinEnglishwithNorwegianastheirnative languagemadeseparatetranslations.Theseweremergedintoone Norwegiantranslationby panelmembersSBand AA.A profes- sionaltranslatorfluentin NorwegianwithEnglishashisnative languageback-translatedthisversionintoEnglish.Alltranslations werediscussedbypanelmembersSBandAAtodecideonafinal Norwegianversion.
ThetwocodersweretrainedbySBandAA.Afterthreesessions of group training, individual coding was performed and all elements of each consultation werediscussed toagree on the correctcoderresponse.In 11consultations,codingwasdecided uponconsensusbetweenthetwocoders,SBandAA.Followingthis initialcoding,thetwocoderscodedeachconsultationseparately.
Afteranadditional10codedconsultationsthecodingagreement wascheckedtokeepconsistentcodingthroughouttheprocess.
Thedatawereanalyzedbasedonthemeanofthescoresofthe tworaters(exceptforthe11consensusscoredconsultations),and the sum OPTION score was transformed into a scale ranging between0and100asrecommendedbythedeveloperofthescale [25].
2.3.Questionnairedata 2.3.1.Patientcharacteristics
Dataonpatientcharacteristicscollectedinthepreconsultation questionnaire included age, gender, marital status, education, occupationandmainlanguage.
Anxietylevelwasmeasuredbeforetheconsultationusingthe HospitalAnxietyand DepressionScale(HADS)[26].Thiswidely used 14-item scale measures the current level of anxiety and depression.Eachofthetwoseven-itemsubscaleshasaminimum valueof0andamaximumvalueof21.
2.3.2.Decisionmaking
ANorwegianversionofthevalidatedControlPreferenceScale (CPS) [27] was used to address patients preferred level of involvementintreatmentdecision-makinginthepre-consultation questionnaire.TheCPSdifferentiatesbetweenpatientswantingan active,passive,orcollaborativeroleindecision-making.
2.4.Statistics
Descriptivestatistics wereusedtodisplayfrequency. Simple and multiple linear regression analyses, with questions from patient,patient/caregiverandnumberofcues/concernsasdepen- dentvariables,wereusedtoexploreassociationsbetweenpatient verbalbehaviorandpatient/consultationcharacteristics.Pearson correlation coefficient was used to address the relationship between patient question asking and expression of cues and concerns.
Therelationshipbetweenpatientquestionaskingandobserved SDMwas explored byrecoding consultationsintothree groups basedonnumberofquestionsasked
OnewayANOVAwasusedtocomparemeanOPTIONscoresfor thesegroups. Independentsamplet-testwasusedtoassessthe relationshipbetweentheOPTIONscoresinconsultationswhere cues and concerns were expressed, compared to consultations where this behavior did not occur. ANCOVA was used when introducinganxietybeforeconsultationasacovariateinthesetwo analysis.
Inter-raterreliabilityforcodingofOPTIONScoresandquestions duringconsultationwerecomputedbytheintraclasscorrelation coefficient(ICC).DatawereanalyzedusingSPSSversion23.
3.Results
3.1.Participants
A total of 19 physicians were invited to participate and all accepted.Ofthe19physicians,13hadoneormoreparticipating patients(range1–4).Mostphysicianswerefemale(7of13) and seniorphysicians(8of13).
Of the 46 eligible patients invited, 34 (74%) consented to participate. Three consultations were not audio recorded; two becausethephysiciandidnotfeelcomfortablemakingtheaudio recordingandoneduetotechnicalfailure.Thus,atotalof31audio files were available for analysisand included in the study. All
Table2
Baselinecharacteristicsof31consultationswithnewlyadmittedcancerpatients.
Patientcharacteristicswereretrievedfromquestionnairepreconsultation.Thetype ofcancerwasretrievedfromquestionnairesoneweekafterconsultation.Goalof treatment,treatmentdecision,andtypeofimplementedtreatmentwereobtained fromtranscript.
Noof patients
% PatientAge,years
Mean 57
SD 14
PatientGender
Female 20 64
Male 11 36
Caregiverpresent 7 23
Patientmaritalstatus
Married 19 61
Partnered 5 16
Unmarried 7 23
Patienteducation
Year10andbelow 8 26
Year10/HSC 12 39
Universitydegree 7 23
Higherdegree 4 13
Patientfirstlanguage
Norwegian 30 97
OtherNordic 1 3
Patientprimarytumorsite
Colon/anal 5 16
Breast 12 39
Lung 1 3
Testicular 2 7
Other 6 19
Missingdata 5 16
Patientanxietyscorea
Mean 5.0
SD 3.5
PatientspreferredSDMlevelb
Active 4 13
Collaborative 7 23
Passive 20 64
Goaloftreatment
Curative 23 74
Palliative 8 26
Treatmentdecision
Adjuvanttreatment 18 58
Primarytreatment 9 29
Notreatment 3 10
Continuingtreatment 1 3
Newimplementedtreatment
Radiotherapy 14 52
Systemictherapy 13 48
aMeasuredbyHospitalAnxietyandDepressionScale(HADS)preconsultation.
bControlPreferenceScalemeasuringpatients’preferredlevelofshareddecision making(SDM)pre-consultation.
patientscompletedthepre-consultationquestionnaireand26of 31(84%)completedtheoneweekfollow-upquestionnaire.
Table 2showsthepatientcharacteristicsofthe31consulta- tions.
3.2.Audiofiles
Themeanconsultationlengthwas36min,rangingfrom11to 73min.
3.2.1.Physiciansinvitingpatientstoaskquestions
In 90%(28of31)ofconsultationsphysiciansverballyinvited patientstoaskquestions.Mostoften,(18of28)theinvitationcame attheendoftheconsultation.Noneofthephysiciansexplicitly endorsedtheimportanceofaskingquestions.
3.2.2.Questionsfrompatients/caregiver
TheICCforthetotalnumberofquestions(from14consultations coded by both coders) indicated good inter-rater agreement (ICC=0.84).
Thenumberofquestionsaskedbythepatientsvariedwidely fromoneto63questions(mean17,SD15,median11).Caregivers werepresentinsevenoftheconsultationsandhadanactiverole byaskingquestionsinfiveofthese.Questionsraisedbycaregivers wererelativelyfewerthanquestionsaskedbythepatients,except foroneconsultationinwhichthecaregiveraskedmorequestions thanthepatient.Whenincludingcaregiverquestions,themean numberofquestionsperconsultationwas20(SD21,median13).
Fig.1showsdistributionofquestionsfrompatients/caregivers bytopics.
The most frequent type of questions from patients and caregiverswere concerningtreatment 42% (261questions) and practicalissues24%(154questions).Onaverage,eachconsultation had 8.7 questions (SD 10.4) concerning treatment and 5.0 questions(SD5.3)concerningpracticalissues.Onlysevenofthe 615questions(1%)referredtoprognosis,occurringin4ofthe31 consultations. Four of the 615 questions (0.7%) dealt with treatment options, occurring in 2 of 31 consultations. In the follow-upquestionnaire,thevastmajorityofpatients96%(25of 26)reportedthattheyhadgoodopportunitytoaskquestions.
Associationsbetweennumberofpatientquestionsperconsul- tationandselectedcharacteristicsofthepatientandsettingwere
assessedinaregressionanalysis.Theanalysisincludedgender,age, educationallevel,anxietyscore,presence ofcaregiver,curative/
palliativesettingandconsultationlengthasindependentvariables inboththeunivariateandthemultivariableregressionmodel.A separateanalysis includedbothcaregiverandpatientquestions.
Pre consultation anxiety was significantly associated with the numberofquestionsthroughoutallanalysis.Educationallevelwas significantly related to the number of questions only when including caregiver questions. The association between the number of questions and consultation length found in the univariate analysis lost its significance when included in the multivariableanalysis.
Table 3 shows results from univariate and multivariable regression investigating the association between patient and patient/caregiver questions and patient/consultation character- istics.
3.2.3.Emotionalcuesandconcerns
Atotalof40cuesand18concernswereidentified.Although cuesandconcernswereabsentinonethirdoftheconsultations, themajorityofpatients,22ofthe31(71%)expressedoneormore cueorconcernduringtheconsultation.Themeannumberofcues per consultation was 1.3 (SD=1.35, range 0–5), and the mean numberofconcernswas0.6(SD=1.09range0–5).Themajority,47 ofthe58(81%)cuesandconcernswerephysician-initiatedversus patient-initiated. Furthermore, the physicians’ response to patients’cuesand concernsweremore frequently (45/58,78%) explicitandinviting,andlessnon-inviting.Patientsaskingmore questions expressed significantlymore cuesand concernsthan those asking few questions (r(29)=0.47, p=0.007). Association betweennumberofcuesandconcernsperconsultationinrelation to patient characteristics was estimated in regression analysis.
Independent variables included gender, age, educational level, anxietyscore,presenceofcaregiver,palliative/curativesettingand consultationlength.Theassociationbetweennumberofcuesand concernsandconsultationlengthfoundintheunivariateanalysis lostitssignificancewhenincludedintothemultivariableanalysis.
Pre consultation anxiety was the only factor significantly associatedtonumberofcuesandconcernsinboththeunivariate andmultivariableregressionmodel.
Table 4 showsthe resultsfromunivariateand multivariable regressionanalysisinvestigatingtheassociationbetweenpatient
Fig.1.Percentagedistributionoftopicsin615questionsaskedbypatientsandcaregiversduring31primaryconsultationsattheOncologyOutpatientClinic.
cuesand concerns inrelationtopatient/consultationcharacter- istics.
3.2.4.OPTIONscore
The ICC for the total OPTION scores (computed from 20 consultationscoded bybothcoders) indicatedacceptable inter- rateragreement(ICC=0.78).Themeanscorewas12(SD7.9),with scoresrangingfrom2 to30 (ahigher scoreindicating ahigher degreeofSDM).OPTIONscorewasnotassociatedwithphysician characteristics(genderorsenior/juniorphysician).
3.2.5.Assessingtherelationbetweenpatientbehaviorandshared decisionmaking
When assessing the relationship between questions during consultation and observed SDM, we included questions from caregivers when present, since questions from patients and caregivers often complement each other. For further analysis, consultationsweregroupedaccordingtothenumberofquestions asked:Consultationswithfew(0–9),medium(10–19)andmany (20+) questions. OnewayANOVA did not reveal any significant differenceinOPTIONscoresbetweenthesegroups(F(2,28)=1.09, p=0.35).Further,theindependentsamplet-testdidnotrevealany significantdifferencein meanOPTIONscorein consultationsin which patients expressed emotional cues and/or concerns comparedtothose consultationsinwhich thisbehaviordidnot occur(t= 1.09,p=0.29).Introducinganxietybeforeconsultation
asacovariateinthesetwoanalysis(usinganANCOVAmodel)did not revealany significantdifferencein OPTIONscoresbetween patientsinthedifferentgroups.
Table 5 displays the 31 consultations grouped according to numberofquestionsfrompatients/caregiversandpresenceofcues andconcernsalongwithmeanOPTIONscore.
Questions concerningtreatmentoptions andprognosiswere rareinourmaterialandmadeanalysisontheirpotentialindividual effectonOPTIONscoreimpossible.
4.Discussion
Thisstudyexploredcentralelementsof communicationina sample of 31 consultations with newly admitted patients in a Norwegiancanceroutpatient clinic.Thepatientverbalbehavior that was explored included patient/caregiver questions and patients’ expressionof emotional cues and concerns. Physician behavior includedverbal expressions indicating SDM behavior.
Patients’reportedpre-consultationanxietylevelandtheirprefer- encefor involvementinthedecision-making processwerealso obtained.Thenumberofquestionsduringtheconsultationsvaried considerably, increasing withhigher levels of anxiety. Previous studies have also shown the number of questions to vary considerably between individual patients, but also in different oncologysettings[10,12,29].Themajorityofquestionsfromboth patients and caregiversin our studyreferred totreatment and Table3
Univariateandmultivariableregressioninvestigatingtheassociationbetweenpatientandpatient/caregiver.questionsandpatient/consultationcharacteristics.Malegender asreferencegroup.Age,educationallevel,anxietyscoreandconsultationlengthhandledascontinuousvariables,caregiverpresentandcurative/palliativesettingas dichotomousvariables.
Univariateanalysis Multivariableanalysis
Unadjustedregressioncoefficient p-value Adjustedregressioncoefficient p-value Numberofquestionsfrompatients
Gender 0.86 0.88 2.20 0.66
Age 0.061 0.77 0.04 0.82
Educationallevel 4.48 0.11 5.39 0.075
Anxietyscore(preconsultation) 2.47 0.002 2.94 0.001
Caregiverpresent 6.40 0.33 5.80 0.44
Curative/palliativesetting 1.72 0.79 3.43 0.57
Consultationlength 0.39 0.025 0.32 0.12
Totalnumberofquestionsfrompatientsandcaregivers
Gender 1.30 0.88 0.90 0.89
Age 0.22 0.46 0.05 0.84
Educationallevel 8.23 0.035 8.07 0.049
Anxietyscore(preconsultation) 3.30 0.006 3.56 0.002
Caregiverpresent 19.4 0.033 4.51 0.65
Curative/palliativesetting 0.29 0.98 3.68 0.64
Consultationlength 0.70 0.003 0.41 0.13
Table4
Univariateandmultivariableregressioninvestigatingtheassociationbetweennumberofcuesandconcernsfrompatientsandpatient/consultationcharacteristics.Male genderasreferencegroup.Age,educationallevel,anxietyscoreandconsultationlengthhandledascontinuousvariables,caregiverpresentandcurative/palliativesettingas dichotomousvariables.
Univariateanalysis Multivariableanalysis
Unadjustedregressioncoefficient p-value Adjustedregressioncoefficient p-value Numberofcuesandconcerns
Gender 1.21 0.095 1.16 0.089
Age 0.01 0.62 0.02 0.35
Educationallevel 0.07 0.85 0.14 0.71
Anxietyscore(preconsultation) 0.32 0.003 0.29 0.007
Caregiverpresent 1.46 0.078 0.03 0.98
Curative/palliativesetting 0.34 0.67 0.12 0.88
Consultationlength 0.04 0.05 0.05 0.056
practicalissues,whereasquestionsconcerningcentralissuessuch as prognosis and treatment options occurred in very few consultations.Thiscouldbedue toinformationprovidedbythe physicians without the patients asking for it or in previous encounterswithotherhealthcareworkers.However,researchhas found that patients ask more questions concerning prognosis when provided with simple communication aids, such as a questionpromptlist[30,31],suggestingpatientstoaskthesetype ofquestionswhenpromptedto.
Cancerpatientsusuallyexpress2–3cuesandconcernsduring consultations[32].Inthisstudy,wefoundthatpatientsexpressed relativelyfewemotionalcuesandconcerns(mean1.9)duringthe consultationsandthatnumberofcuesandconcernswasrelatedto levelofanxietypreconsultation. Mostcuesand concerns were initiated by physicians, suggesting physicians’ behavior to be importantforpatientstoexpresstheiremotionalconcerns.
Norwegianhealthcarelegislationensurespatientstherightto beinvolvedindecisionsregardingtheirownhealth[4].Thelackof consensusindefiningSDMmakesitdifficulttoexploreinpractice [33]butOPTIONhasbeensuggestedasanefficientandsensitive codingsystemforSDMintheoncologysetting[34].TheOPTION scoresinthis studyindicatedarelativelylow levelofphysician SDMbehavior,andcomparable lowlevelshavepreviouslybeen reportedintheoncologysetting[34].ThelowOPTIONscoresinour studymightreflecttheseriousness of thediseaseand thatthe majorityofpatientsinourstudyinitiallypreferredapassiverolein thedecision-makingprocess.Furthermore,decisionsmayvaryin howwelltheyfitaSDMprocess.Somesituationsmayhaveone strong evidence-based option that indeed should be recom- mendedbythephysician,whileotherdecisionsmayhavemultiple optionswithlessclearevidence,andbemorepreference-sensitive.
Unfortunately,wehavenodataonthetypeofdecisionsin this study.ThisshouldbeIncludedinfuturestudies.ThelowSDMlevel mayalsoreflectthatsomeoftheitemsinthisoriginalOPTIONscale areseldomused,andafiveitemOPTIONcodingsystemhasbeen introduced[35]tobetterutilizethefullscale.Inoursample,the levelofobservedSDMwasneitherrelatedtonumberofquestions northepresenceofcuesandconcerns.However,thesmallsample sizegivesthisstudyalimitedpowertodetectasmalldifferencein OPTIONscorebetweenthegroups.Patientsaskedfewquestions concerningtreatment optionsand prognosis, which arecentral elementsof SDM. This made it difficultto furtherexplore the relationshipbetweenpatientsaskingspecificquestions andthe observedphysicianSDMbehavior.
Themainlimitationofthisstudyisthesmallsampleofpatients andthelimitationsofasinglecenterstudy.Ontheotherhand,one of the strengthsis that all eligible physicians at this oncology department accepted participation in the study. In studies involvingsinglephysiciansfromdifferentinstitutionsit maybe expectedthatphysicianswithparticularinterestincommunica- tionwouldbemostlikelytoparticipate.Thepatientsinthisstudy weremostly female(64%). Althoughgenderwas notassociated withthenumberofquestionsorcuesandconcerns,thisskewed genderdistributionmighthaveaffectedotheraspectsofthestudy.
5.Conclusion
Patientstendedtobeactiveinaskingquestionsandthenumber ofquestionincreasedwithincreasinglevelsofanxiety.Providing prognosticinformationand treatmentoptionsseemstodepend uponphysicians,sincepatientsarticulatedfewquestionsexploring thesetopics.Emotionalissueswerealsorelatedtolevelofanxiety and mostly initiated by physicians, which further supports physicians’ important role in facilitating communication. This studyfoundnoassociationbetweenthenumberofquestionsor emotional cuesandconcerns frompatientsand physician SDM behavior.
5.1.Practicalimplementation
Patientsbeingactiveduringconsultationbyaskingquestions andexpressingemotionalcuesandconcerns,doesnotappearto alter physicians’ behavior to involve patients in SDM. In this sample, questions concerning treatment options and prognosis wereveryfew.Furtherresearchonpatients’influenceonphysician SDMisdesirable,andonepotentialhypothesisisthatproviding patients with communication aids might broaden patients’ repertoireofquestionsandtherebyaffectphysicianSDMbehavior.
Ethics
This studywas carried out in accordance withThe Code of EthicsoftheWorldMedicalAssociation(DeclarationofHelsinki).It was declared a quality assurance project by the Regional Committee for Medical and Health Research Ethics (REK) and approved by the Data Protection Official for Research (NSD) representativeatthehospital.Allpatient/personalidentifiershave beenremovedordisguisedsothepatients/personsdescribedare notidentifiableandcannotbeidentifiedthroughthedetailsofthe story.
Acknowledgments
We are grateful to all the patients and physicians who participated in this study and Kristin Jensen (study nurse) for invaluablehelpindatagatheringandpatienthandling.Wealso wishtothanktheofficestaffattheCancerOutpatientClinicfor theirkindfacilitationofthestudy,IngerSperstadforhelpcreating the database, Bjørn Straume for statistical advice and Rod Wolstenholmeforhelpingraphicaldesign.Thestudywasfunded bytheNorthernNorwayRegionalHealthaAuthority;HelseNord RHF.
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Table5
The31consultationsgroupedaccordingtonumberofquestionsoccurringfrompatients/caregiversandpresenceofcuesandconcernsalongwithmeanOptionscore.
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No n=9 14.5(10.0)
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