Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry

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Tilburg University

Endometrial cancer survivors are unsatisfied with received information about

diagnosis, treatment and follow-up

Nicolaije, K.A.H.; Husson, O.; Ezendam, N.P.M.; Vos, M.C.; Kruitwagen, R.; Lybeert, M.L.;

van de Poll-Franse, L.V.

Published in:

Patient Education and Counseling

DOI:

10.1016/j.pec.2012.05.002

Publication date:

2012

Document Version

Publisher's PDF, also known as Version of record

Link to publication in Tilburg University Research Portal

Citation for published version (APA):

Nicolaije, K. A. H., Husson, O., Ezendam, N. P. M., Vos, M. C., Kruitwagen, R., Lybeert, M. L., & van de

Poll-Franse, L. V. (2012). Endometrial cancer survivors are unsatisfied with received information about diagnosis,

treatment and follow-up: A study from the population-based PROFILES registry. Patient Education and

Counseling, 88(3), 427-435. https://doi.org/10.1016/j.pec.2012.05.002

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Endometrial

cancer

survivors

are

unsatisﬁed

with

received

information

about

diagnosis,

treatment

and

follow-up:

A

study

from

the

population-based

PROFILES

registry

Kim

Agnes

Helma

Nicolaije

a,b,

*

,

Olga

Husson

a,b

,

Nicole

Paulina

Maria

Ezendam

a,b

,

Maria

Caroline

Vos

c

,

Rutgerus

Franciscus

Petrus

Maria

Kruitwagen

d

,

Marnix

Lodewijk

Maria

Lybeert

e

,

Lonneke

Veronique

van

de

Poll-Franse

a,b

a

CoRPS–CenterofResearchonPsychologyinSomaticDiseases,DepartmentofMedicalPsychologyandNeuropsychology,TilburgUniversity,TheNetherlands

b

EindhovenCancerRegistry,ComprehensiveCancerCenterSouth(CCCS),TheNetherlands

c

DepartmentofObstetricsandGynecology,St.ElisabethHospital,Tilburg,TheNetherlands

d

DepartmentofGynecologyandGROW–SchoolforOncologyandDevelopmentalBiology,MaastrichtUniversityMedicalCenter,Maastricht,TheNetherlands

e_Department_of_{Radiotherapy,}_Catharina_Hospital,_Eindhoven,_The_Netherlands

1. Introduction

Endometrialcanceristhemostfrequentgynecologicalcancerin industrializedcountries,withanincidenceof15–25per100,000 womenperyear[1,2].Anageingpopulationwithmorediagnoses of endometrial cancer, increased risk factors, such as obesity, diabetes,and alowerparity,andmoreaggressivetreatmentsin advanced disease all have resulted in increasing numbers of endometrialcancersurvivors.In2005,therewereabout17,000 endometrialcancersurvivorsinTheNetherlands,andthisnumber isexpectedtoincreaseto25,000in2015[3].

Patientinformation is an essential factor in thesupport for cancersurvivorsacrossthewholecancertrajectory.Appropriate information given to cancer survivors about their diagnosis, treatment,possiblelong-termandlateeffectsandreferralservices can result in better informed decision making, lower levels of distress,andimprovedsatisfactionwithcareandsenseofcontrol

[4–7].Cancersurvivorswhoaresatisﬁedwiththeinformationthey received have a better health related qualityof life, and lower levels ofdepression and anxiety[8]. Studiessuggest that most cancer patients want as muchinformation as possible[7,9,10]. However, the information needs of cancer patients differ by gender, age,culturalbackground,educationallevel,cancer type, stage of disease (at diagnosis, treatment and follow-up), and coping style [11,12]. Understanding factors associated with informationprovisionmighthelphealthcareproviderstoprovide morepatient-centeredinformationby givingadequate informa-tiontothosewhoneedit,attherighttime[13].

ARTICLE INFO Articlehistory:

Received30January2012

Receivedinrevisedform27April2012 Accepted2May2012 Keywords: Endometrialcancer Cancersurvivors Informationprovision Informationsatisfaction Population-based PROFILESregistry ABSTRACT

Objective:Toevaluateperceivedlevelofandsatisfactionwithinformationreceivedbyendometrial

cancersurvivors,andtoidentifyassociationswithsocio-demographicandclinicalcharacteristics.

Methods:Allpatientsdiagnosedwithendometrialcancerbetween1998and2007,registeredinthe

EindhovenCancerRegistry,receivedaquestionnaireincludingEORTC-QLQ-INFO25.

Results:Seventy-seven percent responded (n=742). Most patients indicated receiving quite a bit

informationabouttheirdiseaseandmedicaltests.However,mostpatientswerenot(54%)oralittle

(24%) informed aboutthe cause oftheir disease, and possible side effects (36%; 27%).Especially

informationaboutadditional help,rehabilitation,psychologicalassistance,andexpectedresultson

socialandsexuallifewaslacking.Fivepercentwasnotoralittle(36%)satisﬁed.Fourpercentfoundthe

informationnotoralittle(35%)helpful.Fifteenpercentpreferredmoreinformation.Youngerage,more

recentdiagnosis,radiotherapy, absenceofcomorbidities,havingapartner,havingreceivedwritten

information,andhighereducationallevelwereassociatedwithhigherperceivedinformationreceipt.

Conclusion:Manyendometrialcancersurvivorsareunsatisﬁedwithreceivedinformation.Severalareas

ofinformationprovisionareexperiencedasinsufﬁcient.

Practice implications:More patient-tailored information is probably needed to provide optimal

information.ImplementationofSurvivorshipCarePlansmightbeawaytoachievethis.

ß2012ElsevierIrelandLtd.Allrightsreserved.

*Corresponding authorat: CoRPS, Department of Medical Psychology and Neuropsychology,TilburgUniversity,Warandelaan 2, POBox90153, 5000LE Tilburg,TheNetherlands.Tel.:+31134662299;fax:+31134662175.

E-mailaddress:K.A.H.nicolaije@uvt.nl(K.A.H.Nicolaije).

ContentslistsavailableatSciVerseScienceDirect

Patient

Education

and

Counseling

j ou rna l hom e pa ge :ww w. e l s e v i e r. c om/ l o ca t e / pa t e duc ou

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Previousresearchhasshownthatlikelihoodofcure, informa-tion on (spread of) disease, and side effects of treatment are informationneeds ofgynecologicalcancersurvivors[14–16].In addition, previous studies suggest that gynecological cancer survivors would appreciate more information concerning how thediseaseandtreatmentaffecttheirself-image,sexuality[17], and fertility [18]. Identifying thespecific information needs of endometrialcancersurvivorsmightfacilitategynecologists, radio-therapists,medicaloncologists,andoncologynursesinproviding patient-centeredinformation,whichmaycontributetoimproved qualityoflifeofendometrialcancersurvivors.However,untilnow, researchinvestigatingthespecificinformationneedsof endome-trialcancersurvivorsislacking.Investigatingthecurrentstateof informationprovisionanddegreeofsatisfactionwithinformation provisionofendometrialcancersurvivorsisvaluabletodetermine whetherthecurrentinformationprovisionissufficient,orwhether improvementis necessary.Thepresentstudy thereforeaims to assess theperceived level of and satisfaction with information receivedbyendometrialcancersurvivors,andtoidentifypossible associationswithsocio-demographicandclinicalcharacteristics. 2. Methods

2.1. Settingandparticipants

Across-sectionalstudywasperformedamong1091 endome-trial cancer survivors registered within the Eindhoven Cancer

Registry(ECR)oftheComprehensiveCancerCenterSouth(CCCS). TheECRrecordsdataonallpatientsnewlydiagnosedwithcancer inthesouthernpartoftheNetherlands.TheECRwasusedtoselect patientsdiagnosedwithendometrialcancerbetweenJanuary1st 1998andOctober1st2007in10hospitals.Allindividuals(age18– 84 years) diagnosed with endometrial cancer FIGO stages I–II (classiﬁcation 1988) were eligible for participation. Deceased patientswereexcludedbylinkingtheECRwiththeCentralBureau ofGenealogy(Fig.1).Ethicalapprovalforthestudywasobtained fromaMedicalEthicsCommittee.

2.2. Datacollection

DatacollectiontookplacebetweenMayandJuly2008andwas donewithinPROFILES(PatientReportedOutcomesFollowingInitial treatmentandLongtermEvaluationofSurvivorship).PROFILESisa registryforthestudyofthephysicalandpsychosocialimpactof canceranditstreatmentfromadynamic,growingpopulation-based cohort of both short and long-term cancer survivors. PROFILES containsa largeweb-basedcomponent andis linked directlyto clinicaldatafromtheECR.Detailsofthedatacollectionmethodhave beenpreviouslydescribed[19,20].DatafromthePROFILESregistry willbeavailablefornon-commercialscientificresearch,subjectto study question, privacy and confidentiality restrictions, and registration(www.profilesregistry.nl).

Gynecologistssent their (former) patients a letterto inform themaboutthestudyandaquestionnaire.Toavoidcoercionand

1478 women diagnosed and registered with stage I or II endometrial cancer between January 1, 1998 and October 1, 2007 in the region of the Eindhoven Cancer Registry

Still alive on March 1, 2008 1280 (87%) patients

198 patients deceased

81 patients were ≥ 85 years on March 1, 2008

Gynecologists in 10hospitals received an invitation to let their patients participate in this study

1 hospital declined participation, N=108

Addresses of all 1091 patients alive, were checked for correctness

126 (12%) addresses could not be verified

A questionnaire was sent to the remaining 965 patients

223 (23%) patients did not complete the questionnaire

742 (77%) patients returned a completed questionnaire

Fig.1.Flow-chartofthedatacollectionprocess.

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assure anonymity, patients were asked to send the informed consentform and questionnaireback tothe researchersat the ComprehensiveCancerCenterSouthinapre-stampedenvelope. Returned questionnaires contained only a study number. By returning the completed questionnaire, patients agreed to participateand consented withlinkageof the outcomesof the questionnaireto their disease history asregistered in theECR. Patientswerereassuredthatnon-participationwouldnothaveany consequencefortheir follow-upcareortreatment. Non-respon-dents weresent a reminder letter and questionnaire within 2 months.

2.3. Measures

2.3.1. Socio-demographicandclinicalcharacteristics

ClinicalandpatientinformationwasobtainedfromtheECR[21]

(i.e.,dateofbirth,dateof diagnosis,diseasestage,andprimary treatment). The questionnaire included questions on socio-demographic data (i.e., maritalstatus, employment status, and educational level). Comorbidity at the time of survey was categorized according to the Self-administered Comorbidity Questionnaire(SCQ)[22].

2.3.2. Informationprovision

To evaluate the perceived level of and satisfaction with information among endometrial cancer survivors, the Dutch versionoftheEuropeanOrganisationforResearchandTreatment ofCancer(EORTC)QLQ-INFO25questionnairewasused[23].This 25-item questionnaire incorporates four information provision subscales:perceivedreceiptofinformationaboutthedisease(four itemsregardingdiagnosis,spreadof disease,cause(s)ofdisease andwhether thediseaseis undercontrol), medicaltests (three items regarding purpose, procedures and results of tests), treatment(sixitemsregardingmedicaltreatment,beneﬁts, side-effects,effectsondiseasesymptoms,sociallifeandsexualactivity) and other care services (four items regarding additional help, rehabilitation options,managing illness at home, psychological support).Thequestionformatwasasfollows:‘‘duringyourcurrent diseaseortreatment,howmuchinformationhaveyoureceivedon ...?’’ Additionally, it contains several single items on having receivedwritteninformationorinformationonCDsortape/video anditemsonthesatisfactionwith,amountof,andhelpfulnessof information. Theanswercategories were‘‘notat all’’,‘‘a little’’, ‘‘quiteabit’’,and‘‘verymuch’’,exceptforfouritemswhichhavea twopointyes/noscale.Furthermore,anopenquestionwasasked onwhattopicssurvivorswouldliketoreceivemoreinformation on.Afterlineartransformation,allscalesanditemsrangeinscores from 0 to 100, with higher scores indicating better perceived informationprovision.Thequestionnairehasbeeninternationally validated,andinternalconsistencyforallscalesisgood(

a

>0.70), asistest–retestreliability(intraclasscorrelations>0.70)[23].A recentstudyalsoshowedthat thescalestructureof theEORTC QLQ-INFO25isvalid[24].OurdatarevealedCronbach’salphasof 0.78(disease),0.91(medicaltest),0.85(treatment)and0.78(other careservices)forthefoursubscalesrespectively.Apartfromthe EORTC-QLQ-INFO25questionnaire,twosinglequestionsaboutthe useofInternetforseekingadditionalinformationwereadded(i.e., ‘‘Do you make use of the Internet?’’ and ‘‘Have you used the Internet to look for information about endometrial cancer?’’), whichcouldbeansweredwitheitheryesorno.

2.4. Statisticalanalyses

AllstatisticalanalyseswereconductedusingSPSSversion17.0 (StatisticalPackagefor SocialSciences,Chicago,IL,USA),and p-valuesof<0.05wereconsideredstatisticallysigniﬁcant.Missing

items from multi-item scales of the EORTC QLQ-INFO25 were mean-imputedifat leasthalfof theitemsfromthescalewere answered,accordingtotheEORTCQoLguidelines[6,23,25].

Differences in socio-demographic and clinicalcharacteristics betweenrespondents,non-respondents,andpatientswith unveri-ﬁable addresses were compared using ANOVA for continuous variablesandchi-squaretestsforcategoricalvariables. Frequen-ciesand percentageswereusedtosummarizecategorical data; meansandstandarddeviationswereusedtosummarize continu-ousdata.

Differences between satisfied and unsatisfied survivors in perceived receipt of information, helpfulness of information, wantingmoreorlessinformation,receiptofwritteninformation, anduseoftheInternet,werecomparedusingt-testsforcontinuous variables and chi-squaretestsforcategorical variables. Patients were categorized into two groups: (a) patients who were unsatisfiedoronlyalittlesatisfied,classifiedasunsatisfiedand (b)patientswhowerequitesatisfiedorverysatisfied,classifiedas satisfied.

ANOVA and chi-square tests were performed to investigate meandifferencesbetween socio-demographicand clinical char-acteristics(independentvariables),andthesubscalesoftheEORTC QLQ-INFO25 (dependent variables). For all ANOVAs, Bonferroni correctionswereused.

Multivariate linear and logistic regression analyses were performed to investigate the association of socio-demographic andclinicalcharacteristicswiththesubscalesoftheEORTC QLQ-INFO25.Inthemultivariateanalyses,allsocio-demographic and clinicalvariableswereincluded.Thiswasdeterminedapriori[26]. All predictors were entered simultaneously in the regression analyses.

3. Results

3.1. Patientandtumorcharacteristics

Of the 965 endometrial cancer survivors who were sent a questionnaire, 742 (77%) returned a completed questionnaire (Fig. 1). Respondents were younger than non-respondents (p<0.001), with a mean age of 66.7 years (range 26.8–84.6). Themeantimesincediagnosiswas4.9years(range0.7–10.0)and mostpatients(93%)hadstageIendometrialcanceratdiagnosis.All patientsweretreatedwithsurgery,followedbyradiotherapy(23%) orchemotherapy(1%),ifindicated(Table1).

3.2. Perceivedinformationprovision

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Fifteenpercentofthepatientsindicatedthattheywishedthat theyhadreceivedmoreinformation.Seventy-ﬁveresponseswere givenontheopenquestionregardingthetopicssurvivorswould liketoreceivemoreinformationon.Mostfrequentlymentioned topicswerethepossiblecausesofendometrialcancer,prevention andriskofrecurrence,possibleside-effectsoftreatment,effectsof treatmentontheirsexuallife,aftercare,psychologicalsupport,and overallinformationonendometrialcancer.Ontheotherhand,6% ofthepatientsindicatedthattheywishedthattheyhadreceived less information. Thirteen responses were given on the open

questionregardingthetopicssurvivorswouldliketohavereceived lessinformationon.Mostfrequentlymentionedtopicswerethe effectsoftreatment,possibleside-effectsoftreatment,andoverall informationonendometrialcancer.

Overall, 36% of the patients were just a little satisﬁed or unsatisﬁed(5%)withtheinformationtheyreceived,and35%found theinformationalittleornot(4%)helpfulatall.Mostsurvivors (70%)statedthattheyreceivedwritteninformation.TheInternet wasusedby39%oftheparticipantsofwhich59%haduseditto searchforadditionalinformation.

Table1

Socio-demographicandclinicalcharacteristicsofquestionnairerespondents,non-respondentsandpatientswithunveriﬁableaddresses.

Respondents Non-respondents Patientswithunveriﬁableaddresses p-Value

N=742 N=223 N=126

Ageattimeofsurvey(mean,SD) 66.7(8.5) 69.4(8.9) 66.8(10.2) <0.001

<55 8% 4% 9% 0.01

55–69 55% 48% 58%

70 37% 48% 33%

Yearssincediagnosis(mean,SD) 4.9(2.5) 5.3(2.4) 2.4 0.06

<2 13% 9% 8% 0.26

2–5 41% 40% 43%

>5 45% 51% 49%

FIGOstageatdiagnosis

I 92% 92% 94% 0.89 II 8% 8% 6% Treatment Surgeryalone 76% 77% 81% 0.42 Surgery+radiotherapy 23% 22% 17% 0.44 Surgery+chemotherapy 1% <1% 2% 0.56 Comorbidity None 20% 1 26% 2ormore 54% Maritalstatusa Partner 70% Nopartner 27% Educationallevelb High 10% Intermediate 63% Low 24% Employed Yes 16% No 85% a

Maritalstatusincluded:partner=married/livingtogether;nopartner=divorced/widowed/nevermarried.

b

Educationlevelsincludedlow=no/primaryschool;intermediate=lowergeneralsecondaryeducation/vocationaltraining;orhigh=pre-universityeducation/high vocationaltraining/university.

Fig.2.Differencesoninformationprovisionsubscalescoresbetweensurvivorswhoaresatisﬁed(n=396)andnotsatisﬁed(n=284)withtheperceivedinformationprovision andhelpfulnessofinformation.

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3.3. Satisfactionandperceivedinformationprovision

Satisﬁedsurvivors(n=396;58%)indicatedthattheyreceived moreinformationonallsubscalesoftheEORTCQLQ-INFO25,and found theinformation more helpful than unsatisﬁedsurvivors (n=284;41%)(allp<0.01;Fig.2).

Unsatisfiedcancersurvivorsindicatedthattheyreceivedless writteninformation(54%vs. 82%),andwantedtoreceivemore information (27% vs. 7%; all p<0.01) than satisfied survivors. Someunsatisfiedcancersurvivors,on theotherhand,indicated that theywantedtoreceive lessinformation (10%vs. 3%)than

satisfiedsurvivors(p<0.01).Therewerenosignificantdifferences betweenunsatisfiedandsatisfiedsurvivorsintheuseofInternet foradditionalinformation(22%vs.28%).

3.4. Associationswithperceivedlevelofandsatisfactionwith informationprovision

In univariate analyses, younger patients indicated that they receivedlessinformationaboutmedicaltests(p<0.05)andother careservices(p<0.01),andwantedmoreinformation(p<0.01) thanolderpatients(Table3).Havingapartnerwasassociatedwith

Table2

Perceivedinformationprovisioncharacteristics.

Noinformationatall% Alittleinformation% Quiteabitinformation% Verymuchinformation% Disease Diagnosis 5 28 47 20 Spreaddisease 13 30 40 17 Causedisease 54 24 14 7 Undercontrol 6 21 45 29 Medicaltests Purposetest 12 26 42 20 Coursetest 8 29 43 21 Resultstest 5 24 48 23 Treatment Medicaltreatment 15 21 42 23 Non-medicaltreatment 92 5 1 2 Expectedresult 20 23 41 17 Sideeffects 36 27 27 10

Expectedresultsondiseasesymptoms 34 27 27 12

Expectedresultsonsociallife 52 30 12 6

Expectedresultsonsexuallife 56 27 11 6

Otherservices

Additionalhelp 62 25 10 4

Rehabilitation 78 15 5 2

Copewithcancerathome 55 31 11 3

Psychologicalassistance 80 14 4 2

Singleitems

Differentcarelocations 70 19 9 3

Thingstodotogetbetter 42 35 17 6

Notsatisfied% Alittlesatisfied% Quiteabitsatisfied% Verysatisfied%

Satisfactionwithinformation 5 36 42 16

Nothelpful% Alittlehelpful% Quiteabithelpful% Veryhelpful%

Helpfulnessofinformation 4 35 45 16

Yes% No%

Receivedwritteninformation 70 30

Receivedinformationonvideoorcd-rom 6 94

Wantedmoreinformation 15 85

Wantedlessinformation 6 94

Table3

ANOVAandchi-squaretestsevaluatingthedifferencesinmeaninformationprovisionsubscalescores(SD)betweentheindependentvariables. Information about disease Information aboutmedical tests Information about treatment Information aboutother services Satisfaction with information Helpfulnessof information Wantmore information Wantless information

Mean(SD) Mean(SD) Mean(SD) Mean(SD) Mean(SD) Mean(SD) %Yes %Yes

Age * ** **

<55 53(22) 64(22) 45(22) 26(23) 57(26) 60(23) 23 4

55–69 53(22) 61(26) 39(24) 14(18) 57(26) 58(25) 17 5

70 48(24) 56(29) 36(27) 13(19) 54(28) 56(27) 10 7

Yearssincediagnosis ** *

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moreperceivedinformationprovisionaboutthedisease(p<0.01), andtreatment(p<0.05),andﬁndingtheinformationmorehelpful (p<0.05).Survivorswhowereyounger,andsurvivorswhohada partner indicated that they received more information on the

expected results of their treatment on their sexual life (both p<0.01).Survivorswhowereyounger,whowereemployed,had morecomorbidities,hadahighereducationallevel,andwhoused theInternetforadditionalinformationindicatedthattheywanted

Table3(Continued) Information about disease Information aboutmedical tests Information about treatment Information aboutother services Satisfaction with information Helpfulnessof information Wantmore information Wantless information

Mean(SD) Mean(SD) Mean(SD) Mean(SD) Mean(SD) Mean(SD) %Yes %Yes

Radiotherapy ** Yes 50(22) 60(25) 44(23) 13(19) 55(25) 57(25) 18 7 No 52(23) 60(27) 37(25) 15(18) 57(27) 58(26) 15 6 Comorbidity * ** ** ** None 56(22) 64(28) 42(26) 14(17) 67(26) 64(25) 11 9 1 51(22) 60(26) 40(24) 16(19) 58(25) 59(25) 9 3 2ormore 50(23) 58(27) 37(25) 14(19) 52(27) 55(26) 20 6 Maritalstatusa ** * * Partner 53(22) 61(26) 40(25) 14(19) 58(27) 59(25) 14 6 Nopartner 47(24) 57(28) 34(25) 16(19) 53(26) 55(26) 19 6 Educationallevelb ** ** * High 54(20) 70(24) 49(24) 18(20) 60(24) 65(24) 22 3 Intermediate 52(22) 60(26) 38(24) 14(19) 57(27) 58(25) 16 6 Low 48(25) 55(28) 35(26) 15(18) 54(28) 56(29) 9 8 UseofInternet * ** * Yes 55(20) 65(23) 42(25) 16(19) 58(26) 60(25) 20 5 No 50(23) 58(27) 37(25) 14(19) 56(27) 57(26) 14 6 Writteninformation ** ** ** ** ** ** ** 6 Yes 55(21) 64(24) 42(24) 17(20) 62(24) 63(23) 13 5 No 43(24) 51(28) 30(25) 10(15) 44(28) 45(27) 21

Note:EORTC-QLQINFO25scales0–100:highscoresreﬂectbetterperceivedinformationreceived.

*

p<0.05.

**

p<0.01.

a

b

Table4

Multivariatelinearandlogisticregressionanalysesevaluatingtheassociationofindependentvariableswiththeinformationprovisionsubscales.

Disease(beta) Medicaltests(beta) Treatment(beta) Other(beta) Satisfactionwithreceived information(oddsratio95%CI)

Age 0.25 0.05 0.07 0.10* 1.00(0.97–1.02)

Yearssincediagnosis 0.07 0.11* 0.03 0.12** 0.96(0.89–1.03)

FIGOstage

I Ref Ref Ref Ref Ref

II 0.01 0.03 0.00 0.04 1.40(0.71–2.76)

Radiotherapy

Yes Ref Ref Ref Ref Ref

No 0.03 0.01 0.15** 0.03 1.21(0.79–1.86)

Comorbidity

None Ref Ref Ref Ref Ref

1 0.13* 0.07 0.03 0.06 0.54(0.31–0.92)*

2ormore 0.11* 0.07 0.03 0.06 0.39(0.24–0.63)**

Maritalstatusa

Partner Ref Ref Ref Ref Ref

Nopartner 0.09* 0.04 0.07 0.06 0.72(0.49–1.06)

Employed

No Ref Ref Ref Ref Ref

Yes 0.03 0.03 0.01 0.02 0.88(0.52–1.50)

UseofInternet

No 0.02 0.01 0.01 0.03 1.10(0.72–1.67)

Writteninformation

No 0.20*** 0.18** 0.21** 0.17** 0.29(0.20–0.42)**

Educationallevelb

High Ref Ref Ref Ref Ref

Intermediate 0.02 0.15* 0.17** 0.07 0.78(0.43–1.39) Low 0.07 0.18** 0.17* 0.02 0.62(0.32–1.20) R2 0.08 0.08 0.32 0.25 0.16 *_p_<_0.05. ** p<0.01. a

b

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to receive more information. Patients who stated that they receivedwritteninformation indicatedthat theyreceivedmore informationon all oftheinformation provisionsubscales,were moresatisfiedwiththeinformation,foundtheinformationmore helpful,andlessoftenindicatedthattheywantedtoreceivemore informationthanpatientswhodidnotreceivewritteninformation (all p<0.01; Table 3). Patients who received less information abouttheirdisease,medicaltests,andtreatment,andpatientswho indicated to have received less useful information wanted significantlymoreinformation(allp<0.05).Hospitaloftreatment andcancerstagewerenotsignificantlyassociatedwithperceived informationprovision,satisfactionwithinformation,helpfulness ofinformation,orwantingmoreorlessinformation(Table3).

Inmultivariateanalyses,ashortertimesincediagnosiswas associated with more perceived information provision about medicaltests(p<0.05),andothercareservices(p<0.01)(Table 4).Youngeragewasassociatedwithmoreperceivedinformation provisionaboutothercareservices(p<0.05).Havingundergone radiotherapywasassociated withmore perceived information provisionabout treatment(p<0.01).Patientswho hadoneor morecomorbiditiesindicatedthattheyreceivedlessinformation about their disease (p<0.05). Having a partner was also associated with more perceived information provision about thedisease(p<0.05).Highereducational levelwasassociated withmoreperceivedinformationprovisionaboutmedicaltests (p<0.01) and treatment (p<0.01). Having received written information was associated with all four of the information provision subscales (all p<0.01). Higher satisfaction with information provision was independently associated with ab-senceofcomorbidities (p<0.01),andhaving received written information(p<0.01).Cancerstage,employmentstatus,anduse oftheInternetforadditionalinformationwerenotsigniﬁcantly associatedwithperceivedinformationprovisioninanyofthefour subscales(Table4).

4. Discussionandconclusion 4.1. Discussion

Inthepresentstudy,mostpatientsindicatedthattheyreceived quite a bit information about their disease and medical tests. However,asubstantialpercentageofthepatientsstatedthatthey werenotoronlyalittleinformedaboutthecauseoftheirdisease, andpossiblesideeffects oftheir treatment.Endometrialcancer survivors received the least information on topics related to aftercare,suchaswhattoexpectintheir socialand sexuallife, wheretogofor additionalhelp,rehabilitation,or psychological support, and how tocope with cancer at home, differentcare locationsoutside thehospital,orthings todo toimprovetheir health.Moreover,issuesrelatedtoaftercarewerementionedmost frequentlyastopicsthatendometrialcancersurvivorswantedto receivemoreinformationabout.ThemeansoftheEORTC QLQ-INFO25scoresoftheendometrialcancersurvivorsinthecurrent studysamplewerelowerforallofthesubscalescomparedtotwo validation studies who included cancer survivors with diverse tumortypes[23,24].

Survivorswhowerenotsatisfiedwiththereceivedinformation, indicatedthattheyreceivedlessinformation onallinformation provisionsubscales,andfoundtheinformationlesshelpfulthan satisfiedsurvivors.Moreover,unsatisfiedsurvivorsindicatedthat theywantedtoreceivemoreinformationthansatisfiedsurvivors. Interestinglyhowever,asmallgroupoftheunsatisfiedsurvivors indicated that they wanted to receive less information than satisfiedsurvivors.Itisinterestingtonotethattherewassome overlapinthetopicsonwhichpatientswantedtoreceiveeither moreorlessinformation.Whereas somepatientsindicatedthat

theywanted toreceivemore informationon thepossible side-effects of treatment and overall information on endometrial cancer,otherpatientsindicatedthattheywantedtohavereceived lessinformationonthesetopics.Theseﬁndingsmayimplythatin ordertoimprovesatisfactionwithinformationprovision,health careprovidersshouldscreentheirpatientsbyaskingabouttheir speciﬁcinformationneeds.

Factorsassociatedwithhigherperceivedlevelsofinformation wereyoungerage,highereducationallevel,morerecentdiagnosis, havingundergoneradiotherapy,absenceofcomorbidities,having a partner, and having received written information. Factors associatedwithhighersatisfactionwithinformationwereabsence ofcomorbidities,andhavingreceivedwritteninformation.

The observed association between younger age and more perceived information provision is consistent with previous research[13,27].Studieshaveshownthatolderpatientstendto askfewerquestions duringtheir visitwiththeir physician,and mightthereforereceivelessinformation[28,29].Olderpatientsare lessinterestedindetailedinformation,butonlywantinformation aboutthemostimportantaspectsoftheirdiseaseandtreatment

[28].Furthermore,olderpatientshavebeenfoundtohaveagreater reliance on information provided by their health care provider

[10].Doctorsmightalsobeprejudicedagainstolderpatients;some clinicians seemto provideolderpatients with less information

[30].Finally,olderpatientsmayhavemoredifﬁcultiesprocessing andrememberingmedicalinformationtheyreceivethanyounger patients[31].

Survivors with a high educational level indicated that they receivedmoreinformationabouttheirmedicaltestsandtreatment thanlowereducatedsurvivors.Previousstudieshaveshownthat highereducatedpatientswantasmuchinformationonprognosis aspossible[32],aremorelikelytoseekinformationfromagreater rangeofsources,liketheInternet[10],andshowmoreperceived uncertainty [33]. For these reasons, higher educated survivors might ask their gynecologists for more explanation when the providedinformationdoesnotyetanswertheir needs.Itisalso possiblethatdoctors(whoare highereducated themselves)are morepronetogivemoreinformationtopatientswithasimilar educationallevel.Highereducatedpatientsmayalsobebetterable to understand and remember the information. To improve information provision for lower educated patients, health care providers could pay moreattention to patients’ health literacy levels,i.e.‘‘thedegreetowhichindividualshavethecapacityto obtain, process and understand basic health information and servicesneededto makeappropriate health decisions’’[34], by providinginformationonabasiccomprehensionlevel.

Patients who were diagnosed and treated shortly before completionofthequestionnaire,reportedthattheyreceivedmore informationabouttheirmedicaltestsandothercareservices.This findingmightindicatethat informationprovisionhasimproved withtime.However,itcouldalsobeascribedtothediminishing contactsofpatientswiththeirgynecologistafterthecompletionof treatment and follow-up [35]. Patients who are still under supervisionofahealthcareprovidermighthaveaclearerpicture oftheinformationtheyreceived.Itisalsopossiblethatrecallbias influencedthesefindings.Patientsmayforgettheinformationthey received,becauseitisoftencomplexandemotionallycharged[36]. Themeantimesincediagnosiswas4.9years,whichcouldhinder the recall of the received information. For future research, longitudinalstudiesareneededtobeabletoassesstheperceived informationprovisionovertime.

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patients,asthetreatment ismore complexand canhavemore seriousacuteandlong-termeffectsthansurgeryalone.

Patientswithfewercomorbiditiesreportedthattheyreceived moreinformationabout their diseaseandwere more satisfied with the information. It is possible that patients with more comorbiditieshavemorespecificinformationneeds,thatarenot fulfilledby the standard information provided to them. They might also have difficulties separating the information they received about their other condition(s) from the information about their cancer, or they might compare these sources of informationwitheachother.

Patientswhohaveapartneralsoindicatedthattheyreceived moreinformationabouttheirdisease.Itispossiblethatthepartner went to the consultations together with the patient, and also rememberedthereceivedinformation.Previousresearchindicates that accompanied patients are likely tobeneﬁt from the extra informationthattheircompanionsremember[37].Thepresenceof companionshasbeen foundtoincrease patient understanding, involvement in the consultation, and decision-making [38]. Discussingthereceivedinformationwiththeirpartnermayhelp patientstobetterunderstandandremembertheinformationthey receivefromtheirgynecologist.

Finally, patients who received writteninformation indicated thattheyreceivedmoreinformation,andweremoresatisﬁedwith the information than patients who did not receive written information. This ﬁnding is consistent with previous studies, whichhaveshownthatprovidingpatientswithwritten informa-tion increases their recall, knowledge and satisfaction with information[39,40].

Some limitations of the present study should be noted. Althoughdemographicand clinicalcharacteristicswerepresent ofthenon-respondentsandpatientsofwhomtheaddressescould not be veriﬁed, it remains unknown why non-respondents declined to participate. In addition, the cross-sectional design limitsthedeterminationofcausalassociationsbetweenthestudy variables.Furthermore,withameantimesincediagnosisof4.9 years,thepatientsinthecurrentstudycanbedescribedas (long-term)endometrialcancersurvivors,whoareoutoftheacutephase of medical treatment and decision making. The results can thereforenotbegeneralizedtopatientswhoareinthemidstof theirtreatmentphaseorshortlyaftertreatmentcompletion.For futureresearch,itwouldbeinterestingtocomparetheresponses ofthesegroupsofpatients.Inaddition,nothingisknownaboutthe relation with other patient-reported outcomes. For future re-search,itwouldbeinterestingtolookatassociationswithother outcomes,suchaspsychologicaladjustment.Anotherlimitationis that the EORTC QLQ-INFO25 response options (‘‘not at all’’, ‘‘a little’’,‘‘quiteabitand‘‘verymuch’’)donotgiveparticipantsthe option to respond with ‘‘somewhat’’ or ‘‘a moderate amount’’. Patientswereforcedtochoosebetweennoinformationoralittle information,andquiteabitofinformationoralotofinformation. Some patients may have preferred a more moderate response option. Finally, the EORTC QLQ-INFO25 only measures the informationpatientsindicatedtheyreceivedduringtheirdisease ortreatment.Itdoesnotmeasurewhoprovidedtheinformation, and when the information was provided exactly. It would be interestingtoassesswhichaspectsofinformationpatientsreceive from their different health care providers (i.e., gynecologist, radiotherapist,medicaloncologist,oncologynurse,general practi-tioner),atwhatpointintheirdiseasetrajectorytheyreceivethe information,andwhetherthisisassociatedwithhelpfulnessofand satisfactionwiththeinformationreceived.Moreover,astheEORTC QLQ-INFO25assesses patientreported outcomes, it is notclear howmuchinformationwasactuallyprovided.Itwouldtherefore also be interesting to compare data on actual information provisionwithdatafromquestionnaires.

4.2. Conclusion

Despite the limitations noted, the present study provides importantnewinformationbyshowingtheperceivedlevelofand satisfaction with information received by endometrial cancer survivors, and the associations with socio-demographic and clinicalcharacteristics.Theseresultscanhelphealthcareproviders giveadequateinformationtothosewhoneedit.The population-based sampling frame, high response rate, and large range in elapsed time sincediagnosismake it possibletogeneralizethe resultstoabroadrangeofendometrialcancersurvivors. 4.3. Practiceimplications

As the number of endometrial cancer survivors is rapidly increasing, and provision of information is one of the most importantfactorsinthesupportforcancersurvivors,itbecomes more important toinvestigatethe current stateof information provisionandsatisfactionwithinformationprovisionin endome-trialcancersurvivors.

The present study shows that endometrial cancer survivors experienceseveralareasofinformationprovisionasinsufficient, suggesting room for improvement. Health care providers often havelimitedtimeandresources.Withgrowingevidencethat well-informedpatientsaremoresatisfiedwiththeircare,anddobetter clinically [35], efforts are needed to improve the information provisiontoendometrialcancerpatients.Thecurrent identifica-tion of the specific information needs of endometrial cancer survivorsandthefactorsassociatedwiththeseinformationneeds could facilitate a more patient-tailored approach of informing patients, which may contribute to improved satisfaction and qualityoflifeofendometrialcancersurvivors.

Awaytoachievemorepatient-tailoredinformationprovision, recommendedbytheAmericanInstituteofMedicine[41]andthe Dutch Health Council [42], might be the implementation of a Survivorship Care Plan (SCP), which is a summary of patients’ courseoftreatmentasaformaldocument,including recommen-dationsfor subsequentcancer surveillance,managementoflate effects, and strategies for health promotion [41]. The present ﬁnding that endometrial cancer patients who receive written information reportto havereceived more information, and are moresatisﬁedwiththeinformationsupportsthissuggestion.We arethereforecurrentlyevaluatinginarandomizedcontrolledtrial (ROGYCare),whetherprovisionofanSCPtogynecologicalcancer patientsimprovessatisfactionwithinformation,satisfactionwith care,andultimatelyqualityoflife[43].

Roleoffundingsource

Data collection and data dissemination for this study was fundedbytheComprehensiveCancerCenterSouth,Eindhoven,the Netherlands and an investment grant of the Netherlands Organisation for Scientiﬁc Research (NWO #480-08-009), The Hague, The Netherlands; Dr. Lonneke van de Poll-Franse is supported by a CancerResearch Awardfromthe DutchCancer Society(#UVT-2009-4349).Thefundingsourceshadno involve-mentinthestudydesign,thecollection,analysis,and interpreta-tionof data,thewriting ofthemanuscript,and thedecision to submitthepaperforpublication.

Authors’contributions

IncollaborationwiththeOOG-CCCS(OrganizationOncologic GynecologyoftheComprehensiveCancerCenterSouth),LP,CV, andRKcontributedtotheconceptanddesignofthestudy.LP,CV, ML,andRKcontributedtotheacquisitionofthedata.OHandKN

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analyzedthedata.KNdraftedthemanuscript.Allauthorsprovided inputintorevisionsofthemanuscriptandhaveapprovedtheﬁnal manuscript.

Conﬂictofinterest None.

Acknowledgements

Wewouldliketothankallpatientsandtheirdoctorsfortheir participationinthestudy.SpecialthanksgotoDr.M.vanBommel, whowas willingtofunction as anindependent advisor and to answerquestionsofpatients.Inaddition,wewanttothankthe followinghospitalsfortheircooperation:AmphiaHospital,Breda; CatharinaHospital,Eindhoven;ElkerliekHospital,Helmondand Deurne;JeroenBoschHospital,‘sHertogenbosch;MaximaMedical Center,EindhovenandVeldhoven;SintAnnaHospital,Geldrop;St. Elisabeth Hospital, Tilburg; TweeSteden Hospital, Tilburg and Waalwijk; VieCuri Hospital, Venlo and Venray, and Institute Verbeeten,Tilburg.

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