Unmet information needs about the delivery of rheumatology health care services: A survey among patients with rheumatoid arthritis
Meesters, J.; Boer, I. de; Berg, M. van den; Fiocco, M.; Vliet Vlieland, T.
Citation
Meesters, J., Boer, I. de, Berg, M. van den, Fiocco, M., & Vliet Vlieland, T. (2011). Unmet information needs about the delivery of rheumatology health care services: A survey among patients with rheumatoid arthritis. Patient Education And Counseling, 85(2), 299-303.
doi:10.1016/j.pec.2010.10.004
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Shortcommunication
Unmet information needs about the delivery of rheumatology health care services: A survey among patients with rheumatoid arthritis
Jorit Meestersa,b,*,Ingeborg de Boera, Marleenvan den Bergc, Marta Fioccod, TheaVlietVlielanda,e
aDepartmentofRheumatology,LeidenUniversityMedicalCenter(LUMC),Leiden,TheNetherlands
bDepartmentofPhysicalTherapy,LeidenUniversityMedicalCenter(LUMC),Leiden,TheNetherlands
cDepartmentofPediatricOncology/Hematology,VUUniversityMedicalCenter(VUmc),Amsterdam,TheNetherlands
dDepartmentofMedicalStatisticsandBioinformatics,LeidenUniversityMedicalCenter(LUMC),Leiden,TheNetherlands
eDepartmentofOrthopaedics,LeidenUniversityMedicalCenter(LUMC),Leiden,TheNetherlands
1. Introduction
Self-management strategies are important for patients with rheumatoidarthritis(RA)tocopewiththeconsequencesoftheir disease[1–5].A formalbodyof knowledgeisa prerequisitefor effective self-management [6]. Several studies in RA patients demonstrated a considerablelack of knowledgeor information need about the disease [1,2,7–9], medical care [1,7–9], drug therapy[1,2,7,9,10]ortreatmentfromhealthprofessionals[11].
Thefewstudieson determinantsof informationneedindicated thatlowerage,longerdiseaseduration[11],morediseaseseverity, painand a greaterlearning interest[7] wereassociated witha higher information need among RA patients. Knowledge and
informationneedonpracticalaspectsofhealthcaredelivery(i.e.
where,howandbywhom)havenotyetbeenaddressed.
Patients’ preferences regarding the method of information deliveryhavehardlybeenexamined,exceptfortheInternetbeing animportantsourceofinformation[12–15].
Given the scarcity of data on RA patients’ knowledge and information need, this study aimed to investigate the level of patientperceivedknowledgeandinformationneedonlocaland regionalhealthcareservicesandtheirdeterminants,andpatients’
preferencesregardinginformationdelivery.
2. Methods
2.1. Studydesignandpatients
This cross-sectional study was part of a larger study also includingRApatients’lifestyle[16,17].ItwasconductedinApril 2004 at the Leiden University Medical Center (LUMC), The Netherlands and judged to be non-medical research according ARTICLE INFO
Articlehistory:
Received31March2010
Receivedinrevisedform27August2010 Accepted3October2010
Keywords:
Rheumatoidarthritis Clinicalhealthpromotion Healthcareservices Consumerhealthinformation Healthservicesaccessibility Unmetneeds
ABSTRACT
Objective:Tomeasurepatient-perceivedknowledgeandinformationneedregardingregionalhealth careservicesandtheirdeterminantsamong400patientswithrheumatoidarthritis(RA)andtoidentify thepreferredmethodofinformationprovision.
Methods:Postalsurveyonknowledgeandinformationneed(contentandaccessibility)of18regional healthcareservicesandpreferencesforthemodeofdeliveryofinformation.Logisticregressionanalyses determinedwhichfactorswereassociatedwithinsufficientknowledgeandinformationneed.
Results:Two-hundred and thirty-seven (94%) patients reported insufficient knowledge about the contentsand235(94%)abouttheaccessibilityofatleastonehealthcareservices,whereas172patients (69%)reportedaninformationneedaboutthecontent and154(61%)ontheaccessibility.Agewas significantlyassociatedwithknowledgewhereasbothageandphysicalfunctioningweresignificantly associatedwithinformationneed.Seventy-ninepercentofthepatientsmentionedwritteninformation, 21%theInternetand12%personalcontactwithaprofessionalasapreferredmethodofinformation delivery.
Conclusion:ManyRApatientsreportedalackofknowledgeorinformationneedconcerningthecontents andaccessibilityofregionalhealthcareservices.
Practiceimplications:Activestrategiestoprovidepracticalinformationabouthealthcareservicesare neededforRApatients.
ß2010ElsevierIrelandLtd.
*Correspondingauthorat: LeidenUniversityMedicalCenter,Departmentof Rheumatology,Postalzone:H0-Q,RoomC-00-054,P.O.Box9600,2300RCLeiden, TheNetherlands.Tel.:+31715263457;fax:+31715266697.
E-mailaddress:J.J.L.Meesters@lumc.nl(J.Meesters).
ContentslistsavailableatScienceDirect
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
0738-3991 ß2010ElsevierIrelandLtd.
doi:10.1016/j.pec.2010.10.004
Open access under the Elsevier OA license.
Open access under the Elsevier OA license.
tothe Medical Research InvolvingHuman SubjectsAct by the MedicalEthicsReviewCommitteeoftheLUMC.
Subjectsincludeda randomsample of400 patients withRA accordingtothe1987ACRcriteria[18],obtainedfromaregistryof 1500outpatients. All patients received a questionnaire and an informationletterexplainingtheaimofthestudybymail.
2.2. Measurements
2.2.1. Socio-demographicvariables
Socio-demographicvariablesincludedmaritalstatus,employ- mentstatusandeducationallevel.
2.2.2. Health-relatedqualityoflife
A validated Dutch version of the Short Form 12 health questionnaire (SF-12) was used [19,20], yielding mental and physicalcomponentsummaryscores(range0–100,higherscores indicatingbetterqualityoflife).
2.2.3. Knowledgeandinformationneedaboutregionalrheumatology healthcareservices
Patients’self-perceivedknowledgeandinformationneedwere measured witha self-developed questionnaire. For 18 regional healthcareservices,patientsindicatedtheirknowledgeoncontent and accessibility(sufficient=0, insufficient=1)and their infor- mationneedoncontentandaccessibility(noinformationneed=0, informationneed=1),resultingin4totalscores,allrangingfrom0 to 18 (insufficient knowledge contents, insufficient knowledge accessibility, information need contents, and information need accessibility)(seeFig. 1).
Patients were also asked how they preferred to receive information: by written leaflets, electronic information via Internet or e-mail, information via a telephone helpline or by personal contact with a professional (more than one answer possible).
2.3. Statisticalanalysis
Differences between responders and non-responders were analysed withtheMann–Whitney Uor Chi-Squaretests where appropriate.
Correlationsamongtheinsufficientknowledgeandinformation need scores were computed by Spearman rank correlation coefficientswiththe95%confidenceinterval(CI).
Associations between patient characteristics and the four knowledge and information need scores were examined by univariate logisticregressionanalyses.Forthis purpose,insuffi- cientknowledgeandinformationneedscoresweredichotomized according to the median. Subsequently, multivariate logistic regressionanalyseswereperformedwithallsignificantexplana- toryvariablesfromtheunivariatelogisticregressionanalysesas independentvariables.Resultswereexpressedasoddsratios(OR) withthe95%CI.Forallanalyses,p0.05(2-tailed)wasconsidered thecriterionforstatisticalsignificance.
3. Results
3.1. Patientcharacteristics
Twohundredandfifty-oneofthe400patients(63%)completed thequestionnaire(Table1).Theirsex,ageanddiseasedurationdid notdiffersignificantly fromthe149non-responders:104(70%) female (p=0.68);mean age 62.4years (SD 14.7, p=0.17), and meandiseaseduration12.5years(SD8.5,p=0.15).
3.2. Knowledgeandinformationneed
Two-hundredandthirty-seven(94%)patientsreportedinsuffi- cient knowledge about the contents and 235 (94%) about theaccessibilityofatleastonehealthcareservice. Themedian
Insufficient Knowledge Questionnaire regarding
18 health care services
About Contents Sum score for 18 items (0-18, low -high insufficient knowledge)
About Accessibility Sum score for 18 items (0-18, low -high insufficient knowledge)
About Contents Sum score for 18 items (0-18, low -high information need)
About Accessibility Sum score for 18 items (0-18, low -high information need) Information need
The use of a questionnaire to score knowledge and information need regarding the contents and accessibility of 18 health care services.
Subsequently 4 sum scores are computed that represent a patient’s level of:
insufficient knowledge contents, insufficient knowledge accessibility, information need contents, and, information need accessibility.
Example questions regarding the knowledge about regional health care services:
Contents: “To what extent are you familiar with what the following health professionals or health care services in your place of living or region actuallydo for patients with arthritis?”
Accessibility: “To what extent are you familiar with how to get access toand contact the following health professionals or health care services in your place of living or region?”
Fig.1.Knowledgeandinformationneedquestionnaire.
J.Meestersetal./PatientEducationandCounseling85(2011)299–303 300
insufficientknowledgescoresoncontentandaccessibilitywere11 (range0–18),and10(range0–18),respectively.
One hundred and seventy-two patients (69%) reported an information need about the content and 154 (61%) about the accessibility of at least one health care services. The median informationneedscoresoncontentandaccessibilitywere3(range 0–18),and2(range0–18),respectively.Table2showsthepatients indicating insufficient knowledge and an information need regardingthecontentsandaccessibilityof18healthcareservices.
3.3. Correlationsamongknowledgeandinformationneedscores
Therewasa significantrelationshipbetween theinsufficient knowledgescoresoncontentandaccessibility(r=0.76,p=0.00) and between the information need scores on content and accessibility(r=0.84,p=0.00).Aweak,yetstatisticallysignificant relationshipwasfoundbetweentheinsufficientknowledgeand informationneedscoresregardingcontent(r=0.15,p=0.02);but notforaccessibility(r=0.11,p=0.09).
3.4. Factorsassociatedwithknowledgeandinformationneed
In the univariate analyses higher age was significantly associated with more insufficient knowledge and a lower information need score, whereas living together and being employedweresignificantlyassociatedwithalowerinsufficient
knowledgescore(Table3).Inaddition,betterphysicalandmental functioningwereassociatedwithalowerinformationneedscore.
Inthemultivariatelogisticregressionanalysishigheragewas associatedwithmoreinsufficientknowledge,whereasbothhigher age and better physical functioning were associated with less informationneed.
3.5. Methodofinformationprovision
Writtenleafletsweremostoftenmentionedasthepreferred method for information provision (178, 79%), followed by the Internetore-mail(48,21%),personalinformationbyahealthcare provider(28,12%),andinformationbyatelephonehelpline(13, 6%).
4. Discussionandconclusion 4.1. Discussion
Thiscross-sectionalstudyamongDutchRApatientsshowsa considerablelackofknowledgeandneedfor informationabout practicalaspects(contentsandaccessibility)ofregionalandlocal healthcareservices.
Our findings are complementary to the available literature, showingthat70%ormoreofpatientswithRAorotherrheumatic diseases havea general lackof knowledgeorinformation need abouttheirdiseaseanditstreatment[1,7,8,11,21].Inourstudy60–
70%ofRApatientsindicatedaneedforpracticalinformationabout rheumatologyhealthcareservices,includinginformationonwhat healthservicesofferandhowtoaccessthem.
We found that a perceived lack of knowledge does not automatically imply an information need, since fewerpatients reported an information need than a knowledge deficit and correlationsbetweenknowledgeandinformationneedwereweak.
Animportantfinding,becauseforcinginformationtopatientswho are not open for it may diminish the chance of a successful behavioralchange[5].
Inlinewithpreviousresearch[12],higheragewasrelatedtoa lesserinformationneedinthepresentstudy.Inaddition,wefound that better physical functioning was associated with less information need. In contrast to previous studies [1,8,11], we didnot find anassociationbetween educationlevel, genderor diseasedurationandinsufficientknowledgeorinformationneed.
The observation that disease duration neither associated with Table1
Characteristicsof251outpatientswithrheumatoidarthritis.
Ageinyears;mean(standarddeviation) 60.5(11.5) Diseasedurationinyears;mean(standarddeviation) 12.5(8.5)
Female 181(72)
Levelaofeducation
Low 122(49)
Medium 94(38)
High 34(14)
Livingalone 46(18)
Employed 67(27)
SF-12b(range0–100)
Physicalfunctioning;mean(standarddeviation) 36.8(10.2) Mentalfunctioning;mean(standarddeviation) 49.5(9.8) Allresultsarepresentedinabsolutenumbers(%)unlessstatedotherwise.
aLevelofeducation:low,uptoandincludinglowertechnicalandvocational training;medium,uptoandincludingsecondarytechnicalandvocationaltraining;
and high, up to and including higher technicaland vocational training and university.
b ShortForm12:higherscoresindicateabetterhealthstatus.
Table2
Numbers(%)of251rheumatoidarthritispatientsindicatinginsufficientknowledgeand/oraninformationneedregardingthecontentandaccessibilityof18health careservices.
Insufficientknowledge Needforinformation
Content Accessibility Content Accessibility
1.Generalpractitioner 46(18) 12(5) 36(14) 11(4)
2.Rheumatologist 17(7) 23(9) 45(18) 17(7)
3.Orthopaedicsurgeon 145(58) 124(50) 51(20) 41(16)
4.Physicaltherapist 48(19) 23(9) 59(24) 35(14)
5.Specializedarthritisphysicaltherapist 181(72) 168(67) 90(36) 83(33)
6.Occupationaltherapist 144(57) 147(59) 46(18) 45(18)
7.Clinicalnursespecialist 121(48) 106(42) 74(30) 68(27)
8.Orthopaedicshoetechnician 92(37) 91(36) 37(15) 31(12)
9.Podiatrists 170(68) 160(64) 54(22) 54(22)
10.Homenurse 158(63) 135(54) 44(18) 42(17)
11.Homehelp 121(48) 110(44) 45(18) 38(15)
12.Socialworker 160(64) 152(61) 42(17) 43(17)
13.Psychologist 179(71) 161(64) 36(14) 34(14)
14.Patienteducationandself-management 175(70) 167(67) 80(32) 71(28)
15.Local/regionalconsumerorganization 107(43) 95(38) 47(19) 35(14)
16.Hydrotherapy 154(61) 163(65) 78(31) 82(33)
17.High-intensitygroupexercisetherapy 184(73) 188(75) 78(31) 76(30)
18.Supervisedexerciseforchronicallyillpeople 201(80) 199(79) 75(30) 74(30)
knowledgenorwithinformationneed,couldbeexplainedbythe relativelylongaveragediseasedurationinoursample,implying thatpatientswithearlyRAwereunderrepresented.
Overall theexplainedvarianceofinformation needwasvery low,underliningthedifficultytoidentifysubgroupsof patients withhigherinformationneed.Fortailoredinformationdelivery, activestrategiesfromprofessionalswillberequired,includinga definition of the patients’ specific problems, their knowledge deficit[22]andtheireducationalneedsandtonegotiaterelevant learningobjectives.Fordiagnosticpurposes,thearthritis-specific EducationalNeedsAssessmentToolisusable[8,11].
Theproportionofpatientspreferringpaperleafletsasfoundin ourstudymaycurrentlybelowerbecauseInternetusageincreased inTheNetherlandsfrom83%to93%between2005and2009[23].
Moreover,thepreferenceforwrittenleafletsmayinpartbedueto patients’lackofexperiencewithinformationontheInternet.To customizetheinformationtotheindividualpatient’sknowledge, abilitiesandbehavior,severalmedia,suchasgroupsessionsand workshops,leafletsviapaperortheInternet,individualface-to- faceconsultations,orDVD’smustbeconsidered.
Thisstudyhadanumberoflimitations.Thesamplewasacross sectional selection fromone university hospital. Moreover, the patients’ level of disability was not measured withthe Health AssessmentQuestionnaire scorebut withthegeneric SF-12. In addition, we used a self-developed questionnaire to measure patient-perceivedknowledgeandinformationneed.
4.2. Conclusions
AconsiderableproportionofDutchRApatientshavealackof knowledgeand aneedforinformation onpractical aspectsof regionalandlocalhealthcareservices.
Lower ageand worse physical functioning were significantly associated with more information need, but overall the explainedvarianceofinformationneedwassmall.
4.3. Practiceimplications
In daily practice, informing RA patients about the practical aspectsofregionalhealthcareservicesisneeded.
Identifyingsubgroupsofpatientswithhigherinformationneeds requiresanactiveandindividualapproach.
Severalmediamustbeconsideredinordertotailorthedelivery ofinformation totheindividual patient’sknowledge,abilities andbehavior.
Conflictofintereststatement
The authors have declaredno conflicts of interest and they confirm that all patient identifiers have been removed so the patientsdescribedarenotidentifiable.
Acknowledgements
WethankMarjanBertensforparticipatinginthisproject.This project was financially supported by a ZonMw Research Grant (Project‘‘ReumanetLeiden’’,project number:32060125,project teamleader:T.P.M.VlietVlieland).
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Table3
Resultsoftheunivariateandmultivariatelogisticregressionanalyses.
Logistic regression analysis
Insufficient knowledgecontents oddsratio(95%CIa)
Insufficientknowledge accessibilityoddsratio (95%CI)
Informationneed contentsodds ratio(95%CI)
Informationneed accessibilityodds ratio(95%CI)
Age(years) Univariate 1.05(1.02–1.07) 1.03(1.01–1.06) 0.98(0.96–1.00) 0.99(0.97–1.01)
Multivariate 1.05(1.02–1.07) 1.03(1.01–1.06) 0.97(0.95–0.99) –
Male Univariate 1.22(0.70–2.12) 1.13(0.65–1.97) 0.61(0.35–1.06) 0.71(0.41–1.24)
Multivariate – – – –
Diseaseduration(years) Univariate 1.00(0.97–1.03) 0.99(0.96–1.02) 1.02(0.99–1.05) 1.00(0.97–1.03)
Multivariate – – – –
Highereducation Univariate 0.88(0.62–1.25) 0.77(0.54–1.10) 1.33(0.93–1.90) 1.17(0.82–1.66)
Multivariate – – – –
Livingtogether Univariate 0.47(0.24–0.91) 0.61(0.32–1.16) 1.20(0.63–2.28) 1.20(0.63–2.28)
Multivariate 0.63(0.31–1.27) – – –
Employed Univariate 0.66(0.37–1.15) 0.51(0.29–0.91) 1.22(0.70–2.14) 1.04(0.59–1.81)
Multivariate – 0.72(0.37–1.42) – –
SF-12Physical(0–100,worst–best) Univariate 0.99(0.97–1.02) 1.01(0.98–1.03) 0.97(0.94–0.99) 0.97(0.94–0.99)
Multivariate – – 0.96(0.93–0.99) 0.97(0.94–0.99)
SF-12Mental(0–100,worst–best) Univariate 1.01(0.98–1.03) 1.02(0.99–1.04) 0.99(0.96–1.01) 0.97(0.94–1.00)
Multivariate – – – 0.98(0.95–1.00)
R2b 0.08 0.04 0.08 0.03
Associationsbetweensocio-demographicsanddiseasecharacteristicsontheonesideandinsufficientknowledgeandinformationneedaboutthecontentsandaccessibilityof healthcareservicesontheotherside.Theknowledgeandinformationneedscoresweresplitattheirmedianscores.Theindependentvariablesthatweresignificantlyassociated withknowledgeorinformationneedintheunivariateanalyses(p0.05)wereenteredintothemultivariatelogisticregressionmodelwiththesamedependentvariable.
a95%confidenceinterval.
bR2=NagelkerkeR2=pseudomeasureforproportionexplainedvariance;boldsignificantresult(p0.05).
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