Diabetic retinopathy screening in patients with diabetes mellitus in primary care: Incentives and barriers to screening attendance
Eijk, K.N.D. van; Blom, J.W.; Gussekloo, J.; Polak, B.C.P.; Groeneveld, Y.
Citation
Eijk, K. N. D. van, Blom, J. W., Gussekloo, J., Polak, B. C. P., & Groeneveld, Y. (2011).
Diabetic retinopathy screening in patients with diabetes mellitus in primary care:
Incentives and barriers to screening attendance. Diabetes Research And Clinical Practice.
doi:10.1016/j.diabres.2011.11.003
Version: Not Applicable (or Unknown)
License: Leiden University Non-exclusive license Downloaded from: https://hdl.handle.net/1887/120257
Note: To cite this publication please use the final published version (if applicable).
Diabetic retinopathy screening in patients with diabetes mellitus in primary care: Incentives and barriers to
screening attendance
K.N.D. van Eijka, J.W. Bloma,*, J. Gusseklooa, B.C.P. Polakb, Y. Groenevelda
aPublicHealthandPrimaryCare,LeidenUniversityMedicalCenter,Leiden,TheNetherlands
bDepartmentofOphthalmology,VUUniversityMedicalCenter,Amsterdam,TheNetherlands
1. Introduction
Diabetic retinopathy (DR) is an important cause of visual impairmentandblindnessamongadultsaged20–74yearsin theUSAandtheUK[1,2].About50–73%ofthosewithvisual impairmentorblindnessasaresultofDRcanbepreventedby early detection and treatment of risk factors, and by photocoagulation[3,4].Therefore,theInternationalDiabetes Federation guidelines recommendearly detectionofDR by
means of DR screening [5]. Prevention of visual loss has improved considerablyduringthelastdecade,especiallyin northern Europe [6]. However, patientcompliance withDR screening is not optimal, as shown by attendance rates rangingfrom32to85%[8–15].
ToincreaseDRscreeningattendance,insightintoincen- tives and barriers to retinopathy screening is necessary.
Becauseearlierstudiesonthistopichaveaqualitativedesign, noreliableanalysescouldbemade.However,longerdiabetes duration,olderageanddiabetes-relatedvisualproblemsare article info
Articlehistory:
Received31August2011 Receivedinrevisedform 2November2011
Accepted7November2011 Publishedonline3December2011
Keywords:
Diabeticretinopathy Screening
Motivation Primarycare Patientcompliance
abstract
Aim: Althoughdiabeticretinopathy(DR)screeningisabasiccomponentofdiabetescare, uptakeofscreeningprogramsislessthanoptimal.Becauseattendanceratesandreasonsfor non-attendanceinanunselecteddiabetespopulationareunknown,thisstudyexamines incentivesandbarrierstoattendDR-screening.
Method:Fourfocusgroupsprovidedpatient-relatedthemesconcerningindividualdecision- makingregardingattendanceatDR-screening.Aquestionnairemeasuringattendancerates andtheinfluenceofseveralfactorswassentto3236diabetespatients(>18years)in20 Dutchgeneralpractices,ofwhich2363(73%)responded.
Results: Inthepast3years,81%ofthepatientshadattendedDR-screening.Patientsnot attendinghadlower levelsofeducation, amorerecentdiagnosis ofdiabetes,andless frequentlyusedinsulin.TherewasnodifferenceinDMtypes1and2patientsregarding attendance.Patientsattendingmoreoftenvisitedhealth-careproviders.Patientsreported
‘knowledge ofdetrimental effectsofDR onvisual acuity’,‘sense of duty’and ‘fearof impairedvision’asmainincentives.Themainbarrierwastheabsenceofarecommendation bythehealth-careprovider.
Conclusion: KnowledgeaboutdetrimentaleffectsofDRonvisualacuityandrecommenda- tionbyhealth-careprovidersareimportant,possiblymodifiable,factorsintheattendance toDRscreening.
#2011ElsevierIrelandLtd.Allrightsreserved.
*Corresponding authorat: PostalzoneV-0-P,Leiden University MedicalCenter,Departmentof PublicHealth andPrimary Care, POBox9600,2300RCLeiden,TheNetherlands.Tel.:+31715268444;fax:+31715268259.
E-mailaddress:J.W.Blom@lumc.nl(J.W.Blom).
ContentsavailableatSciverseScienceDirect
Diabetes Research and Clinical Practice
j o u r n a lh o m e p a g e :w w w . e l s e v i e r . c o m / l o c a t e / d i a b r e s
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doi:10.1016/j.diabres.2011.11.003
associated with screening compliance [14,15]. In the USA, financialbarriersarealsooftenreported[7,13,16–18].Never- theless,the main barrierfor compliancewas the patient’s beliefthat theydonothave DR[11,19]. Other factors were embarrassment about poor glycemic control and fear of ophthalmological treatment [16,20]. Many conclude that patients’ lack of awareness (due to lack of education/
information) is the main obstacle to attend a screening program[7,10,12,13,15,16,20].
In view of the major investments in screening and treatment programs, developing interventions to reduce non-complianceshouldbeapriority[6].
TheDutchguidelinesforscreeningforDRrecommenda screening interval of maximally 2 years [21]. To evaluate compliancewithretinopathyscreeninginthe Netherlands, the present studyassesses current attendancerates of DR screening among patients with diabetes mellitus in Dutch primarycare.Sociodemographicandclinicalfactorsrelatedto (non-)attendance, as well as the patient’s incentives and barrierstoscreening,areexamined.
2. Materialandmethods 2.1. Developmentofthequestionnaire
Intheabsenceofasuitabletooltoevaluatewhichincentives/
barriers play a role in attending DR screening, we used a qualitativeapproachtodevelopsuchaquestionnaire[22].
First,theliteraturewassearchedforreportsonindividual incentives/barrierstoattendDRscreening(e.g.,attitudeand behavior, incentives and barriers to retinopathy screening, knowledgeofvisual impairment asaresult ofDR, and the necessityofscreeningtopreventthis,formerexperiencesin screening, and practical inconveniences). Then, interviews wereheldwith6generalpractitioners(GPs)andwith4patients withdiabetesmellitustorevealmoreincentives/barriersthat are importantto these specialists/patients. Interviews were recordedandtranscribedverbatim.Analysisoftheinterviews wasaimedatfindingallpossibleissuesimportantforattending/
notattendingDRscreening.Issueswereclusteredintothemes tobeusedinfocusgroupinterviews.
Fourfocusgroupmeetingswereheld(in2006)toevaluate which factors play a role in attending DR screening. All participantswereinvitedbytheirGP.Informedconsentwas completed. All meetingswere conducted by a professional moderatorusingapredefinedlistoftopics.Thegroupswere comprised ofa mixof attendees and non-attendeesin DR screeningprograms.Separatemeetingswereheldwithurban andruralpatients(6miles/10kmfromthe hospitalwhere the DR screening was performed). A third focus group consistedofactivemembersoftheDutchDiabetesAssocia- tion.Thefourthfocusgroupconsistedofpeoplewithanon- western-Europeanculturalbackground(ofMoroccanorigin).
Inthislattergroup,additionalquestionswereaskedaboutthe influenceoflanguagebarriersandthepossibleroleofdifferent culturalbackgrounds.
All group interviews were recorded and transcribed verbatim.Allincentivesandbarriersmentionedintheverbatim reportswerescoredindependentlybytworesearchers(KvE,
YG).Findingsderivedfromtheliterature,fromtheindividual interviews,and fromthefocusgroupinterviewswerethen incorporatedintoaquestionnaire(Appendix).
2.2. Quantitativestudy
Allparticipants withdiabetesmellitus(types1and2)(ICPC code T90) aged18 years and over, registered in 20 Dutch general practices, receivedaprinted questionnairein2008.
Three weekslater,a reminderwas senttonon-responding participantscontainingaresponsecardwithtwoquestions:
‘DidyouattendDRscreeninginthelast3years?’and‘What wasyourmainreasonfordoingso?’
A non-response analysis was performed in one of the participatinghealthcenters.Ofthe160patientsinthiscenter, 33hadnotresponded.Thislattergroupweretelephonedby thenurse practitionerandinvitedtorespondtotheabove- mentionedquestions.
Thequestionnairehad3parts:
PartI:Patient’ssociodemographicandclinicalcharacter- istics,includingage,sex,self-reportedheight/weight,educa- tion level, origin (Western-European vs. non-Western European), typeof diabetes, age ofdiagnosis, self-reported HbA1c, diabetesmedication(s),and thelocationofdiabetes care(i.e.,generalpracticeorelsewhere).
Part II: Attendance at DR screening: ‘attendees’ were definedaspatientswhounderwentDRscreeningwithinthe last3years,‘non-attendees’weredefinedasdiabetespatients whohadnotattendedDRscreeninginthelast3years.The3- year period ensures that these patients were ‘real’ non- attendeestakingintoaccounttheDutchguidelineof‘‘mini- mallyoneDRscreeningwithintwoyears’’[21].
Part III: Presence of potentialincentives and barriersto retinopathy screening. Thequestions covered all potential incentives/barriersfromtheschedulesderivedfromthefocus group interviews. All questions in Part III were phrased differentlyinordertobeappropriateforattendeesandnon- attendees. Table 1 presents an example of two typical questions.
3. Analysis
Data wereanalyzedusingSPSSstatisticalsoftware(version 12.0.1).Descriptivestatisticswereusedtoassessthediffer- ence in prevalence of screening attendance among the patients. To analyze differences in sociodemographic and clinicalcharacteristicsbetweenattendeesandnon-attendees, weusedchi-squaretestsforcategoricaldataandt-testsfor continuous data.Chi-squareanalysesand oddsratioswere appliedtocompareincentivesandbarriersbetweenattendees andnon-attendees.
4. Results 4.1. Qualitativestudy
Thefirstfocusgroupwascomprised of5patients(2men,3 women,accompaniedby2interpreters)borninMorocco,the diabetesresearch andclinical practice 96(2012) 10–16 11
secondgroupof4menand4women(activemembersofthe Dutch Diabetes Foundation), the third group of 9 urban patients(4 menand 5 women), and the fourth groupwas comprisedof8ruralpatients(3menand5women).
Tables3and4presentthepotentialincentivesandbarriers derivedfromtheinterviewsandthefocusgroups.
4.2. Quantitativestudy
Thequestionnaire was sent to3236 patientswith diabetes mellitus.Ofthesepotentialparticipants,1891patients(58.4%) filled in the questionnaire and 475 (14.7%) returned the responsecardstatingattendance(totalresponseforresponse card73.1%).Forthenon-responseanalysis,100%ofthenon respondingpatientsofalargegrouppracticewerereachedby telephone(Fig.1).
Intotal,1917patients(81.0%)hadundergoneeyescreening inthe last 3 years and 449(19.0%) had notbeen screened duringthatperiod.Screeningattendanceratesbetweenthe generalpracticesrangedfrom58.8to91.8%.Non-response(to the questionnaire) analysis (n=33) showed a screening attendance of 78.1% among non-responders which was similartotheattendanceamongrespondersinthispractice (81.0%).
Table 2 shows that attendees more oftenhad a higher educationthannon-attendees.Patientswithdiabetesfor10 years or more and those using insulin were more often frequentattendees.Attendeesweremorefrequentlytreated byaninternist.
Inmostcases,eyeswereexamined bymeansoffundo- scopy(74.2%),whereasin18.1% theeyeswerescreened by meansoffundusphotographyand7.7%ofthepatientsdidnot rememberwhichscreeningmethodwasused.Examinationin mydriasiswasreportedby85%ofthepatientsscreened by fundusphotography.
Incentives that occurred less frequently among non- attendees were: eye screening recommendation made by the care provider, awareness of the detrimental effects of diabeticretinopathyonvisualacuity,feelingobligedtoattend retinopathyscreening,andfearofimpairedvision(Table3).
Impairedvisionoreyecomplaintsoccurredmorefrequently amongnon-attendees.
Barriersoccurringmorefrequentlyamongnon-attendees were:noeyescreeningrecommendationmadebytheircare provider,lackofawarenessofthedetrimentaleffectsofDRon visualacuity,screeningwasnotthoughttobeusefulatthe patients’ age (patients aged 70 years), no confidence in doctors,nointerestornotimetoattend,waitingtimeover 30min, requiring an accompanying person, and physical disability (Table 4). Fear of the results of eye screening occurredlessfrequentlyamongnon-attendees.
5. Discussion
5.1. Summaryofmainfindings
Inthese20Dutchgeneralpractices,81%ofthepatientswith diabetes mellitus (types 1 and 2) attended retinopathy screening. Non-attendees had lower levels of education, shorter duration of diabetes and were less likely to use insulin,orbecheckedbyaninternist.Themainincentiveto attend eye screening is knowledge about the detrimental effectsofDRonvisualacuity.Themainbarriertocompliance istheabsenceofarecommendationbythegeneralpractition- er,internistorpracticenurse.
Surprisingly, although it is tempting to believe that participantswithDMtype2knowmoreaboutcomplications andhavealongerdurationofdisease,wefoundnodifference inattendancebetweenparticipantswithDMtype1andDM Table1–Exampleofquestionsinthequestionnaires.
Subject Questioninthequestionnaire
Recommendationbycareprovider A.HasyourGP,internistorGPnurseevertoldyouthatyoureyesneeded checkingbecauseyouhavediabetes?Yes/No/Idonotknow
Isthisadviceareasontohaveyoureyeschecked?Yes/No/Idonotknow IfyourGPorinternisthadnottoldyouthatyouneedyoureyeschecked becauseofyourdiabetes,wouldyoustillhavehadyoureyeschecked?Yes/No
B.HasyourGP,internistorGPnurseevertoldyouthatyoureyesneeded checkingbecauseyouhavediabetes?Yes/No/Idonotknow
Ifno,isthisareasonnottohaveyoureyeschecked?Yes/No/Idonotknow IfyourGPorinternisthadtoldyouthatyouneedtohaveyoureyeschecked becauseofyourdiabetes,wouldyouhavehadyoureyeschecked?Yes/No AwarenessofpossibilitytotreatDR A.Candamagetotheeyescausedbydiabetesbetreated?Yes/No/Idonotknow
Ifyouansweredyes:isthisareasontogetyoureyeschecked?Yes/No
Ifyouthoughtthatdamagetotheeyescausedbydiabetescouldnotbetreated, wouldyoustillhavehadyoureyeschecked?Yes/No/Idonotknow
B.Candamagetotheeyescausedbydiabetesbetreated?Yes/No/Idonotknow Ifyouansweredno:isthisareasonnottogetyoureyeschecked?Yes/No Ifyouthoughtthatdamagetotheeyescausedbydiabetescouldbetreated, wouldyouhavehadyoureyeschecked?Yes/No/Idonotknow
A,thegroupwhohadaDRscreeningtestinthelastthreeyears;B,thegroupwhohavenothadaDRscreeningtestinthelastthreeyears.
type 2. Attendees have more contact with health care providers (lower frequency of no care, lower frequency of GP only, higher frequency of internal medicine). Earlier interventionshaveshown thatbetteraccesstohealthcare increasesDRscreeningattendance[23].Attendeesmoreoften expressed a fear of complications as an incentive for screening, and moreoften feel reassured by the resultsof the screening. In an earlier qualitative study, patients indicatedknowledgeaboutDRaffectingtheeyebutnotabout DRleadingtoblindness[12].Moredetailedinformationabout complicationsmighthelptoincreaseattendance.Althougha sense of duty stimulated attendance, guilt related to poor controlhasbeenshowntodeterpatientsfromattending[12], implyingthatapositivefeedbackaboutattendancecouldbe important.
5.2. Strengthsandlimitationsofthestudy,comparison withexistingliterature
Thisstudyhasseveralstrengths.First,thestudypopulationis large, representative of the diabetes population in the Netherlands [24], and with a high responserate. Although theattendanceratemightbeanoverestimationdueto26.9%
non-responders, non-response analysis showed no differ- encesinscreeningattendancebetweenrespondersandnon- responders. An attendance rate of 81% is relatively low consideringthebroadinclusioncriteria,butisstillprobably higherthanthatinsimilarstudieswhichreportedannualand biannualrates[12,14],exceptforonestudyfromScandinavia (98% biannually)[15].Diabetes careinthe Netherlandshas improvedrecently,stimulatedbybroadlyacceptedguidelines, Questionnaire
(n=3236)
Responders (n=1891)
Non-responders (n=1345)
Reminder
Responders (n=475)
Non-responders (n=870)
Non-response analysis in 1 health center
(n=35) 20 general practices;
patients with diabetes mellitus type 1/2, age ≥18
years (n=3241)
2 patients died;
3 patients without diabetes mellitus
Fig.1–Flowchartshowingparticipationinthepresentstudy.
diabetesresearch andclinical practice 96(2012) 10–16 13
theintroductionofpracticenursesinprimarycare,andICT- drivenprompting.However,thehighcompliancerateinthe present study could be due to the broad definition of
‘attendance’(i.e.,eyescreeninginthelast3years).
The questions (about similar concepts) were phrased differentlyforattendeesandnon-attendees(Table1)inorder to avoid information bias by participants having to give answerstohypotheticalsituations.
Table2–Sociodemographicandclinicalcharacteristicsofattendeesofdiabeticretinopathy(DR)screening,andnon- attendeesofDRscreeningwithinthelast3years.
AttendeesofDR screening(n=1589)
Non-attendeesofDR screening(n=302)
p-Value
Sex
Male 49.3 49.4
Female 50.7 50.6 0.980
Age(years)
<50 12.5 16.1
50–60 26.6 32.2
61–70 31.3 20.4
71–80 20.7 17.3
>80 8.9 14.1 0.459
Education
High(age>12years) 91.6 85.4
Low(age12years) 8.4 14.6 0.002
Origin
Westernorigin 82.7 79.2
Non-westernorigin 17.3 20.8 0.176
Typeofdiabetes
Type1 11.5 8.9
Type2 88.5 91.1 0.314
Durationofdiabetes
Recent(10years) 55.3 66.8
Notrecent(>10years) 44.7 33.2 <0.001
Medication
Nomedication 14.8 36.7
Oralmedication 56.2 54.6
Insulin 14.5 4.8
Oralmedication+insulin 14.5 4.0 <0.001
Organisationofpatient’sgeneralpractitioner(GP)
Single-handed 75.1 77.5
Practicenurse/healthcenter 24.9 22.5 0.373
Diabetescare
Nocare 3.3 13.3
GP 67.5 76.8
Internalmedicine(withorwithoutGP) 29.2 10.0 <0.001
Bodymassindex(meanSD) 28.65.0 28.75.6 0.360
HbA1c(meanSD) 6.81.0 6.91.6 0.846
Alldataareself-reportedandpresentedas%,unlessotherwisestated.
Table3–Individualincentivestodiabeticretinopathy(DR)screening.
AttendeesofDR screening(n=1589)
Non-attendeesofDR screening(n=302)
Oddsratio(95%CI)
Knowledgeandinstructions
Recommendationbycareprovider 99.4 34.5 341(164–715)
KnowledgeofeffectsofDRonvision 96.8 90.1 3.3(2.0–5.5)
AcquaintanceswithimpairedvisionduetoDR 28.8 22.2 1.4(1.0–2.1)
AwarenessofpossibilitytotreatDR 84.6 77.4 1.6(0.9–3.0)
Recommendationbyfriendsorfamily 17.6 20.8 0.8(0.6–1.1)
Medicalconsiderations
Impairedvisionoreyecomplaints 30.2 37.3 0.7(0.6–0.9)
Senseofduty
Feelingobligedtoattend 98.7 91.1 7.7(4.2–14.3)
Fear
Fearofimpairedvisualacuity 60.9 44.4 1.9(1.5–2.5)
Reassurancebyfavorablescreeningresults 97.3 95.0 1.9(1.0–3.6)
Fearthatone’sowneyeshavebeendamaged 13.5 8.6 1.7(0.9–3.0)
Dataarepresentedas%.
Becauseofthecross-sectionaldesign,itisnotpossibleto draw conclusions about whether or not participants who indicated barriers will subsequently attend screening. The presentstudyfocusesonlyonthepatients’currentopinion.
5.3. Implicationsforfutureresearchorclinicalpractice
The main areas for improvement are concerned with knowledge, awareness and instruction, implying that both themainincentivesandbarriersarerelatedtothesetopics.
Moreover, all these are modifiable factors. Some non- attendeesmaybeinclinedtoexternalizethereasonsfortheir non-compliance,ignoringtheircaregivers’effortstostimulate them to attend. However, apart from the waiting time, practicalinconvenienceswerenothighlyratedbarriers(Table 4). Moreover,thelargerange inscreeningattendancerates between the practices (59–92%) indicates that practice organisationcanprobably modifyattendance.Asystematic reviewreportedthatincreasingpatientawarenessofDRand improving provider/practice performance can increase screeningattendance[23].Thus,GPs,internistsandpractice nurses should focus on information, recommendation and follow-uptoencourageattendanceinDRscreening.However, attendanceisalsoinfluencedbyenvironmental,culturaland personalfactors(e.g.,alackoftrustindoctors)whichcannot be unravelled via a questionnaire. The barriers towards attendance may also lie within these areas. For those in high-riskgroups(suchasunderservedinner-city areas,and populations using different languages or with financial constraints)notonlyisactiveeducationandencouragement necessarybutalsofacilitationofDRscreeningbytheprovision ofinexpensivesurveysbyappropriatelytrainedtechnicians.
Collaborationwithcommunity-basedorganisationsinorder toreachhigh-riskgroupscouldbeaneffectivewaytoincrease DRscreening[23].
6. Conclusion
Apart from the more personal views on incentives and barriers, effective areas toincrease attendanceseem tobe relatedtoknowledge,awarenessandinstruction.Thus,even inthispopulationwithhighattendance,thekeytoincreasing attendancemayliewithhealthprofessionalsraisingaware- nessaboutthebenefitsofscreening.Thepracticeorganisa- tions canplayarolebyidentifyingand activelyprompting non-attendeestoundergoDRscreening.
Conflictofinterest
Theauthorsdeclarethattheyhavenoconflictofinterest.
Ethicalapproval
ThestudywasapprovedbytheMedicalEthicsCommitteeof theLeidenUniversityMedicalCenter.
Funding
ThisstudywasfundedbyagrantfromtheDutchDiabetes ResearchFoundation.
Table4–Individualbarrierstodiabeticretinopathy(DR)screening.
Factors AttendeesofDR
screening(n=1589)
Non-attendeesofDR screening(n=302)
Oddsratio(95%CI)
Knowledgeandinstructions
Norecommendationbycareprovider 0.6 65.5 0.003(0.001–0.006)
NoawarenessofeffectsofDRonvision 3.2 9.9 0.3(0.2–0.5)
Beliefthatone’sowneyesarenotdamaged 86.5 91.4 0.6(0.3–1.1)
Medicalconsiderations
Notusefulatpatient’sage(i.e.,>70yearsonly) 1.5 12.9 0.11(0.04–0.29)
Noconfidenceindoctors 1.4 4.2 0.3(0.2–0.7)
Noimpairedvisionoreyecomplaints 69.8 62.7 1.4(1.1–1.8)
Nogainininformationfromscreeningresults 17.7 15.1 1.2(0.9–1.7)
Fear
Fearofresultsofeyescreening 46.7 32.1 1.9(1.4–2.4)
Fearofeyeinjuryduringscreening 11.2 8.4 1.4(0.9–2.2)
Practicalinconveniences
Notinterestedinattendance 11.1 19.9 0.5(0.4–0.7)
Notimetoattend 7.1 14.4 0.5(0.3–0.7)
Waitingtimeover30min 34.1 50.8 0.5(0.4–0.7)
Requiringanaccompanyingperson 46.0 57.0 0.6(0.5–0.8)
Physicaldisability 25.1 30.9 0.7(0.6–1.0)
Laborioustomakeanappointment 28.5 33.0 0.8(0.6–1.1)
Livingmorethan6miles(10km)from thescreeninglocation
49.6 44.4 1.2(0.9–1.6)
Other
Religiousconsiderations 55.2 57.2 0.9(0.7–1.2)
Dataarepresentedas%.
diabetesresearch andclinical practice 96(2012) 10–16 15
