DIABETES AND : MANAGING DIETARY BARRIERS Promotoren:d rJ.G.A.J .Hautvast ,hoogleraa r ind e leer vand evoedin g en voedselbereiding

drA.T.J . Nooij, hoogleraar ind emethode n en techniekenva n het sociale onderzoek /o^o2%>^ l3"

Roland Dingeman Friele

DIABETES AND DIET: MANAGING DIETARY BARRIERS

ONTVANGEN 13 NOV.193 9

CB-KARDEX

PROEFSCHRIFT terverkrijgin gva nd egraa dva n doctori nd elandbouwwetenschappen , opgeza gva nd erecto rmagnificus , drH.C .va nde rPlas , inhe topenbaa rt everdedige n opwoensda g1 novembe r198 9 IilïîLlOÏHi:.:-". - desnamiddag st evie ruu ri nd eaul a LANDlKH'WliNïVÏ^Srra 'l.'Ni vand eLandbouwuniversitei tt eWageninge n wA(;i^i"

IS V

STELLINGEN

1.D euitspraa k 'baathe tniet ,da nschaad the tniet 'geld t nietvoo r restricties inee ndieetadvies . (Dit proefschrift)

2.He tverdien t aanbevelingd estapgroott e invariatielijste nvoo r diabeten tevergrote n tot1 2gra m koolhydraten. (Dit proefschrift)

3.D eadvieze nd esuikerconsumpti e teverlage ne nd ekoolhydraatconsumpti et e verhogen zijn strijdig. McCollKA .Th esugar-fa t seesaw.Nutritio n Bulletin 13,-1114-118:1988.

4.He tadvie s gevarieerd teete nka nverschillen d geïnterpreteerd worden.D e enig juiste interpretatie isonbekend .

5.D etoegenome n technische hulpmiddelen voor diabetendiene n niet alleen ingezett eworde no md eregulati eva nd ediabete st everbeteren ,maa r zekeroo ko mhe ngroter e flexibiliteitva nleve nt ebieden.

6.I fth epatien twa sa furnace ,o ra chemica l retort,an dcoul d passively acceptan ydie t offered, therewoul db en oproblem . HinkleLE .Costurns .Emotions ,an dBehaviou r inth eDietar yTreatmen to f Diabetes.J A mDie tAs s1962;41:341-344 .

7.D euitspraa k dat'D eIslam ' inzij nmiddeleeuwe n zit,e nda t'wij 'toe n ook kruistochten hielden,suggereer t tenonrecht eee nuniversee l ontwikkelingsmodel,namelij khe twesterse .

8.O md ebijdrag eva nve ti nd evoedin g omlaag tebrenge nverdien the t aanbeveling koolhydraat houdende snackso pd emark tt ebrengen ,di e effectiefd e 'hartige'tre k stillen. 9. Deuitspraa k 'Thank God iti s friday' isi nessenti e een creationistische uitspraak.

10.Advieze n over een gezond voedingspatroon worden door de consument doorgaansvertaal d ingebode n enverboden .

11. De consumentword t niet onmiddelijk beloond navertoo n van gezond eetgedrag. Dit isee n fundamenteel probleem voor voedingsvoorlichters.

12. In tegenstelling totvoedingsvoorlichter s kennenmilieuvoorlichter s wel een onmiddellijke beloning, ind e vormva nd e kick van rinkelend glas in een glasbak.

13. Het verdient aanbeveling ombi j eenbezoe k aan De Efteling zelf een prop papier mee tenemen .

Stellingen behorend bijhe tproefschrift : Diabetes and Diet:Managin g Dietary Barriers,Rolan d D. Friele. 1 november 1989 Voor mijn ouders ABSTRACT

DIABETES AND DIET: MANAGING DIETARY BARRIERS

THESIS, DEPARTMENT OF HUMAN , WAGENINGEN AGRICULTURAL UNIVERSITY, THE NETHERLANDS, NOVEMBER 1, 1989

RolandD .Friel e

This thesis reportso nth ebarrier sdiabeti c patients experience with their diet,an dth eway s they copewit h these barriers.A dietar y barrier isa hinderance toa person' swell-being , inducedb ybein g adviseda diet . First inventorieswer e madeo fpossibl e dietary barriersan dway so fcopin g with them. Secondly theprevalenc e ofthes e barriersan dway so fcopin gwit h them were assessed amongdifferen t diabetic populations.Mos t prevalent were barriers expressing physical discomfortan drestriction s infood-use . Barriers with thehighes t prevalence weremos t often dealtwit hb ynon-compliance . The prevalence ofbarrier s among recently diagnosed diabeticsdi dno tdiffe r fromprevalence s aftera follow-u p period ofon eyear . Itwa sconclude d that dietary barriersar eno teasil y overcomeb ydiabeti c patients.Hardl yan y differenceswer e found inbarrie r prevalencewhe n comparing -treated andno ninsulin-treate d diabetic patients.Prevalenc eo fbarrier s among diabeticswit h conventional insulin therapywa shighe r when comparedt o diabeticswit h continuous subcutaneous insulin infusionan da liberalized diet. Iti sconclude d thatdiet sallowin g forvariabilit y inenergy-intak ean d -times will decrease prevalence ofdietar y barriers among diabetics.Als o barrier prevalence could decrease when thedie t isno tperceive d asconsistin g of forbidden foods.Diet s leading toles sdietar y barriersar eno tonl y more pleasurable toliv ewith , suchdiet s alsoar emor e likelyt ob eadhere dto .

Keywords :Diabetes ,Diet ,Patien t Perspective,Dietar y Barriers,Dietar y Education,Copin g Strategies Contents Page Voorwoord 1

Chapter 1. Introduction 3

Chapter 2. Barrierswit h thediabeti cdiet :a review 11

Chapter 3. Dietarybarrier sexperience d byno n insulin-treated 17 diabetic patients (submitted)

Chapter 4. Copingwit h thediabeti cdiet :managin gmultipl e goals 26 (submitted)

Chapter 5. Diabetics'dietar ybarriers :har d toovercom e 35 (submitted)

Chapter 6. Diabetics'sdietar ybarriers :prevalenc e and coping 50 strategies (submitted)

Chapter 7. Diabetes anddiet :th eeffec to fContinuou s 68 Subcutaneous Insulin Infusionan d a liberalized diet onth eprevalenc eo fdietar ybarrier s (submitted)

Chapter 8. Discussion 79

Appendix It oI V 95

Summary 100

Samenvatting 104

Curriculumvite a 108 VOORWOORD

Ditproefschrif t gaatove ronderzoe k naard emoeilijkhede ndi e diabeten ervarenme thu ndieetadvies .He tonderzoe k isi n198 5gestar to pd evakgroe p HumaneVoedin gva nd eLandbouwuniversitei t teWageninge ne nwa smogelij k dankzijproject-subsidie sva nhe tMinisteri eva nWelzijn ,Volksgezondhei d en Cultuur end e Landbouwuniversiteit.

Ditproefschrif t isgeworde n totwa the t is,dankzi jd ebijdrag eva nvel e mensen.Enkel eva nhe nwi l ikme tnam enoemen .Al seerste nwi l ikmij ntwe e promotorennoemen .He nwi l ikbedanke nda t zijme tmi j in zee zijngegaan .D e gesprekkenme tProf .Dr .J.G.A.J .Hautvas twaari nw e zochtennaa rd emees t effectieve manier omhe tonderzoe k aant epakke nhe b ikgewaardeerd .Aa n zijn kundig commentaar heb ikmee r ontleendda nbruikbar e ideeënvoo rdi t onderzoek alleen. Prof.Dr .A.T.J .Noo ybe n ikerkentelij k voord e gesprekkenwaari nhet" 1 mogelijk bleek bovend edagelijks e gangva nhe tonderzoe k uit tekijke ne n voor deadvieze nbi jenkel eanalyses .Mw .Drs .J.M.P . Edemaheef taa nd ewie g gestaanva ndi tonderzoeksproject .Tijden she tgehel eonderzoe k heb ik altijd eenberoe pkunne ndoe no phaa r kritischecommentaar .Same nme tJa nSchuu r heb ikhe tonderzoeksvoorste l voordez e studiegeschreven .D edeskundighei d als medisch socioloogmaa r ookd eeige nervaringe nva nDr .Fran sva nde r Horst hebbenee nbelangrijk e rolgespeel d ind evoorbereidin gva nhe tonderzoek . KarinBemelman sheef te rmed evoo r gezorgdda the tperspectie fva ndi t onderzoek brederwa sda nallee nhe tdiabetesdieet . Indi tonderzoe k heb ikhe tmees t samengewerktme tAnj aNiewind .Di twa smee r dand emoeit ewaard .Doo rd ediscussie sdi ewi jvoerde n ishe t onderzoek uiteindelijk geworden totwa the t is.I khe bgrot ebewonderin gvoo r haar vasthoudendheid enhaa r grondigheid enhoo pda thierva n ietsbi jmi j is blijvenhangen .I kkij k terugo pee ngezellig e tijd.Dan k jewel . Ook anderemedewerker sva nd eVakgroe pHuman eVoedin gwi l ikbedanke nvoo r hun rolbi jhe t tot standkome nva ndi tonderzoek :Kee sd eGraa fvoo r zijn adequate kommentaar openkel emanuscripten ;Ja nBurem avanweg e zijnbereidhei d omme e tedenke nover ,som swa tongewone ,statistisch e analyses;Jaapj e Nooij-Michelsvoo rd e interviewsdi e zijme tgrot e zorgheef tuitgevoerd ;Sio e Kie Kroes-Lievoo rhe t zoekennaa r literatuur end egesprekke nove rvroeg e versiesva nenkel ehoofdstukken ;tenslott eAde l denHarto gvoo rd evoora l beschouwendegesprekke nove ronderzoe k naarvoedingsgewoonten . Dediscussie sme tDr .N.G .Rölin g zorgdenaltij dvoo ree nnieuw e kijk ophe t verdereverloo pva nhe tonderzoek ,waarbi j steedshe t voorlichtingskundig perspectief naarvore n kwam.Bedank thiervoor .Graa gwi l ikoo k Dr.Erns t Chantelaunoemen .Zij nbijdrag ewa sessentiee lvoo rhe tverkrijge nva nd e responsva ndiabete nme tee ngeliberaliseer d dieetadvies.Zij n enthousiasme voor een zoliberaa lmogelij k diabetesdieete n zijndeskundig e onderbouwing vandez evisi ebewonde r ik.Ernst ,viele nDank .

DeDiabete sVerenigin gNederlan d (DVN)speeld e eendubbelrol .Haa r steun is onontbeerlijk geweestvoo rhe tbenadere nva n respondenten,terwij l ikd e bestuursledenva nd eDV N ind e regioEde-Wageninge nme tnam ewi l bedankenvoo r de tijddi e zijvri jhebbe ngemaak tvoo roverle gove rhe tonderzoek . Ookbe n ikverschillend ediëtiste nerkentelij k voorhu nmedewerkin gbi jhe t wervenva n respondenten. Bovenalwi l ikd e respondenten zelfbedanken .Zi jhebbe nme thu n zorgvuldige responsd eeni gmogelijk ebasi sgeleg dvoo rdi tonderzoek .

Dedoktoraa l studentenJeann eva nLoon ,Harrie tOrdelman ,Carienek e Kandou, JokeHoogenboom , StephanMeershoek ,Ensk eGerbrandy ,Petr ava nWezel ,Margrie t deWinkel ,Jacolie nBakke r enRit ad eVrie swi l ikbedanke nvoo rhu nbijdrage n aandi t onderzoekprojekt.Hu n reaktiesdwonge nmi j regelmatig tot stevig nadenkenove rwa t ikgoe donderzoe k vind.

Bijd epraktisch e uitvoeringva ndi tonderzoe k hebbenvele nmi jgesteund , waarvoor dank.Jaco bva nKlaveren ,In eHalverkamp ,Met aMoerma ne nMariett a Eimershebbe ngeholpe nbi jhe tverwerke nva nd eonderzoeksgegevens .Pie t Middelburg en lateroo k Marcelva n Leuterenware naltij dberei d tehelpe n bij financiële oforganisatorisch e problemen.Mij n zus,Christi e Friele,ontwier p hetomslag . Ikbe ne r zeerme everguld .Cole tBroekmeye r en ind e eindsprint Sunil Piershebbe ngeweldi ggeholpe nbi jhe tvinde nva n juiste engelstalige formuleringen:thank sa lot.Bianc a Dijksterhuisheef td e laatste hand gelegd aanhe tuittype nva ndi tproefschrift .

Tenslottewi l ikmij nouder sbedanke ndi emi jgestimuleer d hebbene nhe tvoo r mijmogelij kmaakte no m testuderen .Al sallerlaatst ewi l ikJuli e bedanken voorhaa r steune nhe tplezie rwa tw e samenhebbe ngehad . CHAPTER 1

INTRODUCTION

1.1. General

Influencing people's food choicesi norde rt oimprov ethei r foodus ei s currentlya majo r issue inpreventiv emedicine .I ti srecognize d that food choicesar edifficul tt ochang e (1-3). In198 5researc hwa sstarte di na diabeti cpopulatio nwh ower e requiredt o change their food choicesfo rhealth-relate d reasons.Th econstraint s these patients experiencewer e expectedt orevea lth edifficultie so fchangin g food choices. Furthermoreth eresult so fthi s studycoul dyiel d suggestionsfo r alternative approachest ochang e foodchoice so fth egenera lpublic . This research resulted intw odifferen tdissertations .On ewa spublishe db y AnjaNiewin d (4).Th esecon di sth eon eyou rar eabou tt oread .Th efocu so f this thesisi spresente d inparagrap h1.6 ,wherea sth eoutlin ei st ob efoun d inparagrap h1.8 .

1.2.Diabete sMellitu s

Diabetesmellitu si sa heterogeneou smetaboli cdiseas ewit h profound nutritional implications.Th eincidenc eo fdiabete smellitu si sabou t1 2pe r 10.000 (5).Th eprevalence ,derive d from registration among familydoctors ,i s about12 5pe r10.00 0 (6).Thi swoul d implyabou t 200.000diabeti c patientsi n theNetherlands .Diabeti c patientshav ea defici to finsuli nutilization . According toth edegre eo fthi sdeficit ,tw otype so fdiabete sca nb e distinguished: insulin-dependent diabetesan dnon-insuli ndependen tdiabetes . Thetw otype so fdiabete sar edifferentiate d byetiology ,ag eo fonset , prognosisan dtherapy . Insulin-dependent diabetesi scharacterize db ya severe lacko finsuli nproduction ,i tstart sa ta n'earl yage ,an daffect sth ebod y fora lon g time.No ninsulin-dependen t diabetesusuall y startsa ta late rage , butit sprevalenc e exceeds thato finsulin-dependen tdiabete s(7) . Untreated diabeteswil l causebloo d glucose levelst oincreas ewel l above1 0 mmol/1, leading toketoacidosis .Currently ,diabete smanagemen tha sprogresse d beyond merely surviving .Th eemphasi sno wlie so nincreasin g -4-

longevityan dpreventin g thelong-ter mcomplication so fdiabetes ,whic h especially affect thebloo dvessel san dnerves .Metaboli c derangements associatedwit hpoo r glycémiecontro l area majo rdeterminan t of the frequency and severityo f these complications.Thi sha sbee nth e rationale for current attempts tomaintai nnear-norma l glycemia inpatient swit hdiabete s (8,9). Toacquir enear-norma l glycemia,consistenc y inth etimin go fmeal san d appropriate food choicestogethe rwit h regularactivit yan d insulin injections areo fparamoun t importance for insulin-dependent diabetics.Fo r non insulin- dependentdiabeti cpatient smetaboli c controlma yb eachieve dwit hprope r food selection,weight lossan dphysica l exercise,sometime s combinedwit h theus e ofora lhypoglycemi c agentso r injecting insulin.I nbot h typeso f diabetes thedie tha sbee n recognized asa nessentia l element inbot h themanagemen t of diabetesan d inminimizin g the risko fdevelopin g long-termcomplications .

1.3.Dietar y recommendations

Nutritional recommendations fordiabeti cpatient sar e still controversial (10-16). Iti sagree d thatth eenerg y contento fth edie t should resulti n achieving andmaintainin g adesirabl ebod yweight .Ther e ismuc h controversy regarding theoptima l intake (11),althoug h thegenera l consensus istha tcarbohydrate s shouldmak eu p 50%o fth e total energy intake (17,20). Although sucrosewa s forbidden inth ediabeti c diet fora long time,toda y it is recognized thatmodes tamount so fsucros e (upt o5 0gram sa day )ar e acceptable,provide d iti suse d incombinatio nwit hothe rnutrient s (18,19). Total fat intake shouldb e restricted toabou t 30-35%o f totalenerg yintake , and intake shouldno texcee d 200-300mg/day .Replacemen t of saturated fatswit hunsaturate d fatsma y slowdow n theprogressio n of atherosclerosis.Th enutritiona l compositiono f thediabeti cdie t is similar toth edie tadvise d for thegenera l populationb y theDutc h government (20,21). Currently,mos t insulin-treated diabetic patientshav e learned tous e an exchange system,i nwhic h foodsar eexchange do nth ebasi so f their carbohydratecontent .

Compliancewit h thediabeti cdie t islow . Iti ssuggeste d thatonl yhal f of thediabeti cpatient s complywit h theirdietar y regimens,althoug h measuring dietarycomplianc e isver ydifficul t (22-24). Studieshav epointe d out thedie ta sa difficul taspec to f thediabeti c regimen (25-30).Ou r ownobservation sals odemonstrate d thedie tt ob e a difficult aspect of thediabeti c treatment (4,31). Furthermore the barriers reported bydiabeti c patientsdiffere d fromth ebarrier s reportedb yhealt h careprofessional s (31),potentiall y causing acommunicatio n gapbetwee n diabeticsan d theirphysicia no rdietician .

1.4. Food choices

Untilver y recently,th e studyo f food choiceswa smainl ycarrie dou tb y social anthropologists. In recentyear s sociologistshav eals odisplaye d an interest inthi ssubject .Bot h socialanthropologist s and sociologistswen t fromth eassumptio ntha tther e isa culturalbasi s for foodchoice s(32) . Despite the structural approach inth e 1970's (33)an d themor epractica l or materialistic approacho f the1980' s (34,35), there islittl e explicit theoretical discussion onth eapproac h tob euse d by social scientists inth e studyo f foodchoices . Amongnutritionist s there isconsensu s thatmor e knowledge is required about the factors influencing food choices inorde r toacquir edesire d changes in food habits.Nutritionist sworkin g inthi s fieldhav ebee n focusingmor e on doing research thano n thedevelopmen t ofa theoretica l approach to investigate foodchoices .A fairly comprehensive theoryo n foodchoice sbase d onempirica l studieswa sdevelope d byKrond lan d co-workers (36,37). According toKrond l thebasi c requirement for foodchoice s isa navailabl e food supply. Inothe rwords ,ther emus tb e foodaccessibility ,an d thisdepend so na complex social system.Limite d foodacces swil l reducediversit y in foodus e anddecreas e thechanc eo fa nutritionall y balanced diet.Foo dabundanc e will increase the risko fexcessiv e useo f some foods.Acces s toa foodwil l allow a person theopportunit y totaste ,evaluat ean d thent oaccep to r reject a food.Thi sproces s ofchoosin g foodsprecede sactua l foodconsumption .Foo d choiceswe l influenced by learnedmotive swhic har ebase d on liking for a food,emotiona l response toth e foodo r factualknowledg e about it.Identifie d motivesare :taste ,perceive d health,convenience ,familiarity ,prestig e and tolerance.Tast ean d healthhav ebee n shownt ob e themos t importantmotive s influencing foodchoice s (36-41). Most studiesb y Krondlan d co-workerswer e carried outamon ghealth yan d elderlypopulations ,wh ower eno t restricted in their foodchoices . Theus e of foodsamon ghealth ypopulation sha sals obee n studiedb y Shepherd and co-workers (42-45)an d Tuorila and co-workers (46,47). Theyhav euse d the model of Fishbeinan dAjze n (48)t oexplai n theus eo f fatty foodsan d of salty foods.The y foundpreference sfo r foods tob epredictiv e for theiruse . Perceived socialnorm swer e found tob e lesspredictiv e for fooduse .

1.5.Dietar y barriers

Dietarybarrier shav ebee n suggested aspossibl e reasons forth e lack of compliancewit h thediabeti cdie t (30).Fro mthi spoin to fvie wa dietary barrier isa hinderanc e todietar ycompliance .Bu t thebarrier s thathav e been reported also impingeupo nothe r area'so fa person' swell-being .Diabetics ' dietarybarrier sar e feelingso fhunger ,havin g toea twhil eothe r people do notea to rno tbein gabl e toea tpreferre d foods (49,50). Therefore froma diabetic'spoin to fvie wa dietar ybarrie rno tonl yma yb ea hinderanc e to dietary compliance,bu ta dietar ybarrie r couldals ohinde r adiabeti c patient to feelphysicall ywell , toenjo y foodo r toenjo y their contactswit h other people. Inthi sthesi s the focus iso ndietar ybarrier sa sexperience d by diabetic patients.A dietarybarrie r istherefor edefine da sa hinderanc e toa person's well-being,becaus eo fbein gadvise d adiet .

1.6.Objective san ddesig no f thestud y

The objective of theDiabete sProjec twa s tostud yth edifficultie s diabetic patientsexperienc ewhe nadvise d tochang e their food-usebecaus e of their diabetes.Niewin d (4)studie d thebarrier s insulin-treated diabetic patients experiencewit h theirdiet ,sh e studied thechange s in food-use among insulin-treated diabeticpatient sbefor e thediagnosi s of theirdiabete san d recentlyafte r thediagnosi so f theirdiabete san d she studied the influence of theperceptio n ofcertai n foodso nfood-use . This thesis focussesupo n thebarrier sdiabeti cpatient sexperienc ewit h their diet. Inappendi x Ia novervie w isgive no f thedifferen t studiespresente d in thisthesis . Thisthesi s isfounde d ona qualitativ e inventoryo fpossibl edietar y barriers among insulin-treated diabetics (4)an dno n insulin-treated diabetics (Study 1). Sincedietar ybarrier s areassume d tocontribut e tonon-complianc e(30) , also theway so f copingwit h thedifferen tdietar ybarrier shav ebee n studied. A qualitative inventory ofpossibl eway so f copingwit h thedifferen t dietary barrierswa smad e (Study 2). Thisstud ywa s followed bya n inventoryo f -7-

possibleway so f copingwit h six specifieddietar ybarrier s (Study3) . Itwa sassume d that recentlydiagnose d diabetic patientswoul d experience many dietarybarriers ,becaus e theywer eonl y recently required tomak e changes in their fooduse ,an d thatlate ro n theprevalenc e ofdietar ybarrier swoul d decrease.T o testthi sassumptio n theprevalenc e ofdietar ybarrier san d the wayso f copingwit h themwa sassesse d among recentlydiagnose d diabetic patientswit ha follow-upafte ron eyea r (Study 3). Sincedietar ybarrier sar e causedb y thediabeti cdie t itwa sassume d thatdiabeti cpatient swit h differentdiet swoul d experience differentdietar ybarriers .Thi s assumption was testedb yassessin gbarrier-prevalenc e and theirway so f coping among insulin-treated diabeticsan dno n insulin-treated diabetics (Study 4). Barrier prevalencewa sals oassesse d among insulin-treated diabeticso n conventional insulin therapyan ddiabetic swit h continuous subcutaneous insulin infusion anda liberalizeddie t (Study5) .

1.7. Subjects

The selectiono f subjectspresente du swit h several problems.Firs to f all there isn o registration ofdiabeti c patients inth eNetherlands .Samplin g of patients throughhospital s isdependen t onth e recruitmentproces s carried out by themedica l specialistsan d thusbeyon d ourcontrol . Inthi s studyw e recruited our subjects largely through theDutc h Diabetes Association.Th eDutc hDiabete sAssociatio nha s 38,000members ,80-90 % ofwho m are insulin-treated (6).I ti sknow ntha tmos tpatient swh ohav ebee n diagnosed as insulin-dependent,ar ebein gadvise db ymedica lpersonne l to join theorganization .A n increasing percentage of thepatient scance l their memberships after a fewyears .Thi s suggests thatan yparticula rmembe r of the DutchDiabete sAssociatio nma ywel l bea relatively recently diagnosed diabetic.Patient s joining theDutc hDiabete sAssociatio nma yb emor e interested inthei rdisease .I t isknow n thatmember so f theDutc h Diabetes Association havemor e knowledge aboutthei rdisease ,ar ebette r educated than non-members,an d that femalemember soutnumbe rmale s (51).I nth eligh to f the purpose of theProject , recruitment of insulin-dependent subjects through the DutchDiabete sAssociatio nwa sconsidere d themos tappropriate . Thedatabas e of theDutc hDiabete sAssociatio n containsonl ya small fraction of theno n insulin-dependent diabeticpatient s in theNetherlands .Therefore , non insulin-dependentdiabeti cpatient swer e recruited fromothe rsources . 1.8.Outlin e of the thesis

Chapter 2o f thisthesi s isa reviewo f theliteratur e ondiabetics 'dietar y barriers.Chapter s 3-7 present the resultso fou r studieso ndietar y barriers (seeappendi x I). Chapter 3i sth e reporto fa qualitativ e studyo ndietar y barriersamon gno n insulin-treated diabetic patients (Study 1). Chapter 4 presentsa qualitativ e studyo n theway so f copingwit hdietar ybarrier samon g insulin-treated diabetic patients (study 2). Chapter 5give sth e resultso f an assessment ofth e changeove r timeo fprevalenc e indietar ybarrier samon g 72 recentlydiagnose d insulin-treated diabeticpatient s (study 3), with the prevalence ofway s tocop ewit hdifferen tdietar ybarriers .Chapte r 6deal s with the comparison ofprevalenc e ofdietar ybarrier san d theway so f coping between 571 insulin-treated and 219no n insulin-treated diabetic patients (study 4). Chapter 7discusse s theprevalenc e ofdietar ybarrier samon g 43 pair-matched insulin-treated diabeticpatient swit heithe r conventional treatmento ro n continuous subcutaneous insulin infusionan d a liberalized diet (study 5). Chapter 8contain s thegenera ldiscussio n of thisthesis .

References

1.Ministeri eva nWelzijn ,Volksgezondhei d enCultuur .Not aVoedingsbeleid . 'sGravenhage ,1984-1987 . 2.Worl d HealthOrganisation .Target s forHealt h forAll .WHO-Copenhagen , 1985. 3.National eRaa dvoo r Landbouwkundig Onderzoek (NRLO). Meerjarenplan LandbouwkundigOnderzoe k 1987-1991. 'sGravenhage ,1986 . 4.Niewin dAC . Diabetesan ddiet :foo d choice.Thesis ,Wageningen : AgriculturalUniversity ,1989 . 5.Stichtin gNederland sHuisartseninstituut . Continue morbiditeitsregistratie peilstations,Nederland ,1983 . 6. Pennings-vande r EerdenL .Probleme ne nOplossinge nva nAdolescente n met DiabetesMellitus .Utrecht :Rijksuniversitei t Utrecht,1986 . 7.Albert i KGMM,Kral lLP .Th eDiabete sAnnual/1 .Amsterdam : Elsevier,1985 . 8.Geric h JE.Insulin-dependen tdiabete smellitus :Pathophysiology .May o Clin Proc1986;61:787-91 . 9. ClementsRS .Ne wtherapie s for thechroni c complications of older diabetic patients.A m JMe d1986;80:54-60 . 10.Woo d FC,Bierma nEL .I sdie t thecornerston e inmanagemen to f diabetes? NewEn gJ Me d 1986;6:1224-26. 11. ReavenGM .Ho whig h thecarbohydrate ? Diabetologia 1980;19:409-13. 12. Mann Jl. Dietan ddiabetes .Diabetologi a 1980;18:89-95. 13.Man nJ . Dietary advice fordiabetics :A perspective fromth eUnite d Kingdom. JA m CollNut r1986;5:1-7 . 14. Crapo PA.Carbohydrat e inth ediabeti cdiet .J A m CollNut r1986;5:31-43 . 15.America nDiabete sAssociation .Nutritiona l recommendations and principles for individualswit hdiabete smellitus :1986 .Dia bCar e1987;10:126-132 . 16.Nutta l FQ. Thehigh-carbohydrat e diet indiabete smanagement .Ad v Intern Med1988;33:165-84 . -9-

17.America nDiabete sAssociation :Glycémi eeffect so fcarbohydrates .Dia b Care1984;7:607-8 . 18.Man nJI .Simpl esugar san ddiabetes .Dia bMe d1987;44:135-9 . 19.Peterso nDB ,Lamber tJ ,Gerrin gS ,Darlin gP ,Carte rRD ,Jelf sR ,Man nJI . Sucrosei nth edie to fdiabeti cpatient s- jus tanothe rcarbohydrate ? Diabetologia1986;29:216-20 . 20.Hein eRJ ,Schoute nJA .He tdiabetesdieet :Nie tander sda nvoedin gvoo r gezondemensen .Ne dTijdsch rGeneesk d1984;128:1524-8 . 21.Voedingsraad :Advie sRichtlijne nGoed eVoeding .De nHaag ,1986 . 22.Wes tKM .Die ttherap yo fdiabetes :A nanalysi so ffailure .An nInter nMe d 1973;79:425-34. 23.Christense nNK ,Terr yRD .Wyat tS ,Picher tJW ,Loren zRA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Dia bCar e1983;6:245-50 . 24.Glan zK .Nutritio neducatio nfo rris kfacto rreductio nan dpatien t education:A review.Pre vMe d1985;14:721-52 . 25.Lockwoo dD ,Fre yML ,Gladis hNA ,His sRG .Th ebigges tproble mi ndiabetes . TheDiabete sEducato r1986;12:30-3 . 26.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregim eadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 27.Jenny ,J.L. :A compariso no ffou rag egroups 'adaptatio nt odiabetes .Ca n JPubli cHealt h1984;75:237-44 . 28.Jenn yJL .Difference si nadaptatio nt odiabete sbetwee ninsulin-dependen t andno ninsulin-dependen tpatients :Implication sfo rpatient seducation . PatientEdu cCounse l1986;8:39-50 . 29.Ar yDV ,Toober tD ,Wilso nW ,Glasgo wRE .Patien tperspectiv eo nfactor s contributingt ononadherenc et odiabete sregimen .Dia bCar e1986;9:168-72 . 30.McCau lKD ,Glasgo wRE ,Schäfe rLC .Diabete sregime nbehaviors .Me dCar e 1987;25:868-81. 31.Friel eRD ,Edem aJMP .Omgaa nme the tdiabetesdieet .In :Boogaar dPJMA ,e t al.Voedin ge ndiabetes .Alphe naa nde nRijn :Samso nStafleu ,1984 . 32.Murcot tA .Sociologica lan dsocia lanthropologica lapproache st ofoo d andeating .Wl dRe vNut rDie t1988;55:1-40 . 33.Dougla sM .Implici tMeanings .Essay si nAnthropology .London :Routledg e& KeganPaul ,1975 . 34.Harri sM .Goo dt oEat .Riddle so fFoo dan dCulture .London :Alle n& Unwin , 1986. 35.Mennel lS .Al lManner so fFood .Eatin gan dTast ei nEnglan dan dFranc e fromth eMiddl eAge st oth ePresent .Oxford :Basi lBlackwel lLtd ,1985 . 36.Krond lMM ,La uD .Foo dhabi tmodificatio na sa publi chealt hmeasure .Ca n JPubli cHealt h1978;69:39-43 . 37.Krond lM ,Colema nP .Socia lan dbiocultura ldeterminant so ffoo d selection.Pro gFoo dNut rScienc e1986;10:179-203 . 38.Zimmerma nSA ,Krond lMM .Perceive dintoleranc eo fvegetable samon gth e elderly.J A mDie tAsso c1986;86:1047-51 . 39.Georg eRS ,Krond lM .Perception san dfoo dus eo fadolescen tboy san d girls.Nutritio nan dBehavio r1983;1:115-25 . 40.Krond lM ,La uD ,Yurki wMA ,Colema nPH .Foo dus ean dperceive dfoo d meaningso fth eelderly .J A mDie tAsso c1982;80:523-9 . 41.Reabur nJA ,Krond lM ,La uD .Socia ldeterminant si nfoo dselection .J A m DietAsso c1979;74:637-41 . 42.Shepher dR ,Farleig hCA .Attitude san dpersonalit yrelate dt osal tintake . Appetite1986;7:343-54 . 43.Shepher dR ,Stockle yL .Fa tconsumptio nan dattitude stoward sfoo dwit ha highfa tcontent .Huma nNutrition :Applie dNutritio n1985;39a:431-42 . 44.Shepher dR ,Stockle yL .Nutritio nknowledge ,attitudes ,an dfa t consumption.J A mDie tAsso c1987;87:615-19 . -10-

45.Shepher dR ,Farleig hCA .Preferences ,attitude san dpersonalit ya s determinantso fsal tintake .Huma nNutrition :Applie dNutritio n 1986;40a:195-208. 46.Tuorila-Ollikaine nH ,Lähteenmäk iL ,Salovaar aH .Attitudes ,norms , intentionsan dhedoni cresponse si nth eselectio no flo wsal tbrea di na longitudinalchoic eexperiment .Appetit e1986;7:127-39 . 47.Tuoril aH .Selectio no fmilk swit hvaryin gfa tcontent san drelate d overallliking ,attitudes ,norm san dintentions .Appetit e1987;8:1-14 . 48.Ajze nI ,Fishbei nM .Understandin gattitude san dpredictin gsocia l behavior.Englewood sCliffs ,NJ :Prentice-Hall ,1980 . 49.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 50.Broussar dBA ,Bas sMA ,Jackso nMY .Reason sfo rdiabeti cdie tno n complianceamon gCheroke eindlans .J Nut rEdu c1982;1:56-7 . 51.Visse rA Ph ,va nd eBoogaar dPRF ,va nde rVee nEA .Participati eva n diabeten.Medisc hContac t1985;40:1502-4 . -11-

CHAPTER 2

BARRIERS WITH THE DIABETIC DIET: A REVIEW

Extensiveliteratur esearche susin gDlMDI' sSociological ,Psychologica lan d NutritionAbstract san dMedlin eprovide du swit honl yfe wtitle so nth e subjecto fdietar ybarrier sexperience db ydifferen ttype so fpatients . Virtuallyal lo fthes etitle stha twer efound ,deal twit hdietar ybarrier s experiencedb ydiabeti cpatients .

Therelevanc yo fdietar ybarrier st oth emanagemen to fdiabete sha sbee n stressedb yTunbridg e (1).H estate dtha tcomplianc ewit hth ediabeti cdie t waspoor .H esuggeste da sreason sfo rnon-complianc eth epatient' sfailur et o adjustt oth erequirement so fa controlle ddiet ,an dth ephysician' sfailur e torealiz eho wdifficul tthi sis .H eals ofoun dtha tth ecost so fth ediabeti c dietwer ehighe rtha nth ecost so fa commonl yuse ddie tan dsuggeste dthes e costst ob eanothe rreaso nfo rnon-compliance .Furthermor eh estate dtha tth e timetableo fth ediabeti cdiet sma ydisagre ewit hth etimetabl eo fothe r peoplei nth esocia lgroup ,o rwit hworkin gan dleisur eactivities ,wherea s certainfood stha tar eadvise dma yb eunknow no rdislike db ya diabeti c patient.Tunbridg ebase dhi sopinion supo na stud yo fth ecost so fth e diabeticdiet ,som escattere dliteratur ean dhi sow nobservation sa sa physician. Hinkle(2 )suggeste dtha tth emajo rproble mo fdietar yeducatio nwa sno twha t diabeticpatient sshoul deat .Accordin gt oHinkl eth erea lissu ewa st oge t diabeticpatient sea tit .Hinkl ebase dhi snotion so nsom eremotel yrelate d studiesan dhi sow nobservations .Som eo fhi sobservation sar emerel y anecdotes:' Ihav eknow nboy swit hdiabete st odrin khal fa doze no f12-o z bottleso fcarbonate dbeverage si na nafternoon' .Hinkl estate dtha tth edie t shouldsatisf yth etast eo fa diabeti cpatient ,shoul dno tdisregar dsocia l andcultura lvalues ,shoul dfi tint oth epatient' sroutin ean dth eroutin eo f hisfamily .But ,mos timportan tth edie tshoul dsatisf yfeeling so fhunger . -12-

After thissevera lpublication s stated compliancewit h thedie t tob elow , suggestingdietar ybarrier s tob epartiall y responsible for this lowdegre e of compliance (3-5).

The first study,t oou rknowledge ,wher edietar ybarrier s leading todietar y non-compliancewer e systematically assessed comes fromVerdon k et al. (6,7). They studied28 4diabeti c patientswit hdifferen tdiabeti c treatmentsan d found that 85%o fal l respondents to reported barriers related tothei rdiet . Among thesewer e financialbarriers ,psychosocia lbarriers ,culinar ybarrier s and feelingso fhunger .A majordifficult y in interpreting this study isth e lack ofa descriptio no fho wth ebarrier swer e reportedb y the respondentsan d whatmetho dwa suse d tocategoriz e thesebarriers . Broussard etal . (8)studie d the reasonsfo rdietar ynon-complianc e among9 0 non insulin-dependent (NIDDM)Cheroke e Indians.Respondent swer easke dwhethe r orno t they followed thedie tprescribe d by thedoctor .Whe n theanswe rwa s negative, the interviewersaske d forth e reasons fornon-compliance .Th e researchers independently categorized these reasons fordietar y non-compliance. Ina final joined sessional lbarrier s thatha d been differently categorizedwer ediscusse d and finallycategorize d intothre e main-categories: 1.Barrier s related toth eclinician : feelingso fhunge r ordizziness ,die t not individualized,n odietar y instructions received,disagreemen t on prescribedweigh t lossan ddistrus to f themedica l staff (N=67). 2. Barriers related toth epatient :failur e tofulfil l recognized psychological needs (like feelingdistressed ,bu tno tabl e toea t to feel better), lack of support from familyan d friend,disinteres t in thediet , striving for independence and economic reasons (N=40). 3.Barrier s categorized as resulting fromculturall yembedde dpreference s for Indian foods (N=14). Themethod sused inthi sstud ymak e the resultsmor e traceable thanth e resultso fVerdon k et al. (6,7).Bu t still,i t isno t knownho wman y reported barriersha d tob ediscusse dbefor eagreemen tupo n the final categorization was reached. Furthermore,th e studypopulation ,Cheroke e Indians,doe sno t allow forgeneralizatio no f the resultst oothe rpopulations .

Later studieswer eno tlimite d todietar ybarrier salone ,bu tcomprise d the wholediabeti c regimen.Thes e studiesdemonstrate d thedietar y regimen tob e themos tdifficul taspec to f thediabeti c regimen formos tdiabeti c patients -13-

(9-13). Jenny (9,10)studie d 245diabeti c patients,draw n from 3000patien t fileso f a diabetic day center.Dat ao f these 245patient swer e collected while they visited their physician. The studyvariable s were based onth eHealt h Belief Model; including beliefs about thebarrier s or costsassociate d with taking the recommended action.Th e studyvariable swer e contained ina self-report questionnaire. The research committee of thehospita l and four nurse associates scrutinized anearl yversio n of thequestionnair e for face validity.Als o thequestionnair e was tested ina pilo t study among 35diabeti c subjects. From the 66variable s assessed, eightwer e barriers thatmigh t affect compliance of thevariou s aspects of the self-care regimenan d ninewer e self-reported compliance variables.Th ebarrier swere : cost,time , difficulty, lack ofplanning , inconvenience,no t important,no t told,can' tb e bothered. Ina nanalysi s of these barriers between four agegroups ,Jenn y found the diet tob e considered themos tproblemati c aspecto f the regimen,excep t for the youngest groupwh o identified urine/bloodmonitorin g themos tdifficult ,wit h diet coming second. The barriersmentione d most frequentlywer e difficulty, inconvenience and lack ofplanning . Theoldes t groupmentione d the costsmos t frequently (9).A s the study ofJenn y comprised all aspects of the diabetic regimen itwa s necessary to study those barriers that could be related to thesedifferen t aspects of the regimen.Therefor e these barriers could only be formulated ina ver y general way.

In the sameperio d another research-group developed a 'Barriers toAdherenc e Questionnaire' (11,12). Schäfere t al. (12)describ e theprocedur e of developing thisquestionnaire . Sixperson swit h insulin-dependent diabetes mellitus (IDDM)an d twonurse s specialized indiabete swer e asked to generate asman y problem situations aspossibl e thatoccu r forperson swit h IDDM.Afte r eliminating redundant items 36 items remained ofwhic h the frequency of occurring and severitywer e assessed among these eight respondents. Items occurring infrequently orno tproblemati c were eliminated, resulting ina list of 18 items.Thes e itemswer e administered toadolescent s and adults attending meetings of theAmerica n DiabeticAssociation . Confusing itemsan d items with novariatio n in frequency ofoccurrenc e ordegre e of severitywer e discarded. This resulted ina scale containing 15 items.Thes e items together with variables on general family interaction anddifferen t adherence measures for different regimen aspectswer e administered to 34camper s (aged 12-14 years). -14-

Itwa sfoun dtha tadherenc et oon eare ao fth eIDD Mregime nwa sno thighl y relatedt oadherenc ei na nothe rare ao fth eregimen .Barrier st oadherenc e werefoun dt ob emos tpredictiv eo ffollowin gone' sdiet . Glasgowe tal . (12)als ouse dthi sBarrier st oAdherenc eQuestionnaire .Ou to f the1 5item si nth equestionnair efou rwer erelate dt oth ediet :'I ti seas y tomak emistake so nth enumbe ro ffoo dexchange si na meal' ,'Afte reatin g whatI a mallowed ,I stil lfee lhungry' ,' Ia mi nth emiddl eo fa nactivit y withfriend swhe nI realiz ei ti stim efo rm yafternoo nsnack 'an d 'Iti s embarrassingt oea twhe nth epeopl earoun dm ear eno teating' .Th e questionnairewa sadministere dt o6 5person s(IDDM )wh ower erecruite di n variousways .Respondent swer e12-6 5year so fag ean dno texperiencin gmajo r medicalproblem sbeside sdiabetes .Als osevera ladherenc emeasure swer e assessed:closenes so ffollowin gth ediet ,performanc eo fglucos etests , exercisean dinsuli ninjections .Th ehighes tfrequenc yo fbarrier swa s reportedfo rbarrier so fdietar yan dexercis eadherence .Fro mth ebarrier s relatedt oth edie tth ehighes tprevalenc ewa sfoun dfo rth ebarriers :'I ti s easyt omak emistake so nth enumbe ro ffoo dexchange si na meal' ,'Afte r eatingwha tI a mallowed ,I stil lfee lhungry' .Th esocia lbarrier sha da lowerprevalence .

Arye tal . (13)studie d20 8diabeti cperson s(NIDD Man dIDDM) .The yassesse d regimenadherenc ean dfactor saffectin gadherence .Usin gope nende dquestion s respondentswer easke dt ostat eth etw omos tcommo nreason sfo rpurposefull y decidingno tt oadher et oth ediabeti cregime nan dt ostat eplace so r locationsi nwhic hi twa sdifficul tt oadher et othi sregimen .Th erespons e wasclassified ,an dinter-rate ragreemen t (14)wa scalculate da srangin gfro m 0.75t o0.81 .Ar ye tal . (13)foun dth eresult sfo rdiabeti cpatient swit h IDDMan dNIDD Mt ob egenerall yquit esimilar .Eatin gou ti nrestaurant san d refusinginappropriat efoo doffer sfro mothers ,wer eth emos tfrequentl y mentionedproblemati creason sfo rdietar ynon-compliance .

Whenanalyzin gthes estudies ,w efoun dth emos tnoticeabl eagreemen ti nal l studiest ob etha tbarrier sar econsidere d relevantt ob estudied ,becaus e suchbarrier sma ycaus edietar ynon-compliance .N oexplici tremark swer efoun d thatdietar ybarrier sma yb eundesirabl eirrespectiv eo fthei reffec to f compliance.Thi si ssurprising .Th ebarrier stha twer edescribe dimpl ytha t diabeticpatient shav et ospen dmor emone yo nth ediet .The yfee ltha tthe y canno tea twhe no rwha tothe rpeopl eeat ,o rthe yfee lthe yhav et oea tfood s -15-

theydislik e or can'tea t foodsthe ylike .Als o feelingso fhunge r have been reported asdietar ybarriers .Suc hbarrier s limitdiabetic' soption s toenjo y food,kee pu p social relations,fee lphysicall ywel l or tothe yar e limited to spendmone yo nothe r thingstha n foods required by thediet . Inthos e studieswit ha cleardescription s ofth emethod , two fundamentally differentmethod s toasses sdietar ybarrier swer eused .On emetho d (9-12)wa s tohav e 'experts' (researchers,researc hcommittee ,nurse so r some selected diabetics)creat ea listo rapprov eo fa lis twit hpossibl edietar ybarriers . This list isteste d inon eo rmor epilo t studiesan dadapte d tomak ea final listwit hprecede d response categories.Th e othermetho dwa s toasses sdietar y barriersb yaskin ga sampleo fdiabeti c respondents to indicate reasonsfo r dietarynon-complianc ewit hope nende dquestion s (8,13). The response is categorized,an d frequencieso fbarrier s indifferen t categoriesar e assessed. Suchdifferen tmethod sma y lead todifferen t results,eve n in studiesdon e by two related research-groups.Ar ye tal . (13)use d openende dquestion san d categorized the response.The y found socialbarrier s tob e systematically the most frequentlymentione d reasons fordietar ynon-compliance .Glasgo we t al. (11)applie d a listwit h fourpossibl edietar ybarrier san dprecede d response categories,an d found socialbarrier s tob e lowest infrequenc yo foccurrence .

2.3. Conclusions

From this reviewi t isclea r that thedie tha st ob e considered asa difficult aspecto f thediabete s regimen.Thi s finding justifiespayin g specific attention todietar ybarriers .Ther e isn ocomplet e inventoryo fthes e barriers.Studie sassessin g themos tdifficul t aspecto fth ediabeti cdie t shouldhoweve r bebase do na complet e inventory.Furthermor e thedifferen t dietarybarrier s thathav ebee n identified demonstrate that studying dietary barriersma yb e relevant tounderstan dwh ydiabeti c patientsdeviat e from theirdiet .But ,dietar ybarrier sals o limitdiabetic' s optionst oenjo y food, keepu p social relationsan d feelphysicall ywell . Therefore studying dietary barriers should include alldietar ybarrier s irrespective of theireffec t on dietary compliance.I t remainst ob e studied towha tdegre e thesedifferen t dietarybarrier sma y result indietar ynon-compliance .Lastl y iti seviden t that special attention should bepai d toth emetho d employed ina studyo n dietarybarriers ,sinc edifferen tmethod slea d todifferen tconclusions . -16-

References

1.Tunbridg eRE .Sociomedica laspec to fdiabete smellitus .Lance t 1953:894-899. 2.Hinkl eLE .Customs ,emotion san dbehavio ri nth edietar ytreatmen to f diabetes.J A mDie tAs s1962;41:341-344 . 3.William sTF ,Anderso nE ,Watkin sJD ,Coyl eV .Dietar yerror smad ea thom e bypatient swit hdiabetes .J A mDie tAsso c1967;51:19-25 . 4.Tunbridg eR ,Wetheril lJH .Reliabilit yan dcos to fdiabeti cdiets .Britis h MedJ 1970(1):78-80 . 5.Wes tKM .Die ttherap yo fdiabetes :a nanalysi so ffailure .An nInter nMe d 1973;79:425-434. 6.Verdon kG ,Schuere nA va nder ,Notte-d eRuyte rA ,Huyghebaert - DeschoolmeesterMJ .Onderzoe knaa rdieetprobleme nbi jdiabetici .Voedin g 1976;37:611-619. 7.Verdon kG ,Schuere nA va nder ,Notte-d eRuyte rA ,Huyghebaert - DeschoolmeesterMJ .Onderzoe knaa rdieetprobleme nbi jdiabetici .Voedin g 1976;37:256-270. 8.Broussar dBA ,Bas sMA ,Jackso nMY .Reason sfo rdiabeti cdie tno n complianceamon gCheroke eindians .J Nut rEdu c1982;14:56-57 . 9.Jenn yJL .A compariso no ffou rag egroups 'adaptatio nt odiabetes .Ca nJ PublHealt h1984;75:237-244 . 10.Jenn yJL .Difference si nadaptatio nt odiabete sbetwee ninsulin-dependen t andnon-insulin-dependen tpatients :implication sfo rpatien teducation . PatientEducatio nan dCounselin g1986;8:39-50 . 11.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 12.Schäfe rLC ,Glasgo wRE ,McCau lKD ,Drehe rM .Adherenc et oIDD Mregimens : relationshipt opsychosocia lvariable san dmetaboli ccontrol .Dia bCar e 1983;6:493-498. 13.Ar yDV ,Toober tD ,Wilso nW ,Glasgo wRE .Patien tperspectiv eo nfactor s contributingt ononadherenc et odiabete sregimen .Dia bCar e 1986;9:168-172. 14.Cohe nJ .A coefficien to fagreemen tfo rnomina lscales .Educationa lan d PsychologicalMeasurement .1960;20:37-46 . -17-

CHAPTER 3

DIETARY BARRIERS EXPERIENCED BY NON INSULIN-TREATED DIABETIC PATIENTS

Friele R.D.,Niewin dA.C. ,Hautvas tJ.G.A.J ,an dEdem aJ.M.P .

ABSTRACT

Theai mo fthi s studywa st oidentif yth ebarrier s thatno ninsulin-treate d diabetic patients experience with their diet,an dt ocompar e these barriers with dietary barriers experienced byinsulin-treate d diabetic patients.Dat a were collected usinga semi-structure d questionnaire,i nwhic h5 8respondent s described inthei row nword sa tota lo f50 6barrier s theyexperience d with their diet.Thes ewer e categorized into1 0categorie swit h3 0sub-categories . Results demonstrate thatdietar y barriersar eexperience d because diabetics consider themselves restricted infood st ochoos e from.Barrier sar e experienced when eating insocia l situationsan dbarrier sar ecause db yth e inconsistence between thedie tan dth ephysica l functioningo fa diabetic , leading tofeeling so fhunge ran dsurfeit .Th edie tca nals ob e incompatible with other diseases thandiabetes .Diabetic s experience ithar dt ohav e toea t regularly. They find their diet lackingo fvariet yan dthe y findi thar dt o copewit hdisruption so fthei r routine.Mos to fth ebarrier s assessed inthi s study equally applyt oinsulin-treate d ast ono ninsulin-treate d diabetics. However,som edifference swer e found.I ti sdiscusse d thata patients ' perceptiono fth edie tmay lea dt ounnecessar y restrictions.Also ,th eadvise d dietca nb eunnecessaril y restrictive.B ymodifyin g these restrictionsth e dietwil lb emor e pleasant toliv ewith .

INTRODUCTION

Diabetic patientsar eadvise da specia ldie tt omanag e thepossibl e complicationso fthei rdiabetes .Amon g these complicationsar efluctuatin g blood-glucose levelspossibl y resulting inhypo -o rhyperglycemia . Forno n insulin-treated diabetic patients these fluctuationsca nb emanage db y matching dietary intakewit h physical activities.No ninsulin-treate d diabetics canb eprescribe d oral hypoglycemic tablets.Dietar y intake should bematche d with taking suchmedication .Mos to fth eno ninsulin-treate d diabetic patients tend tob eoverweight . Successful weight-loss usually improves blood-glucose regulation (1-3).T odecreas e theincrease d risko n -18-

cardiovascular diseasesdiabeti c patientsar e advised adie twit hon e third of the total energy-intake coming from fat,o fwhic hon e third shouldb epoly ­ unsaturated (4). A sugar restrictionha sbee na majo r aspecto f thediabeti c diet,bu t recently theconsumptio no f sugar isconsidere d acceptable.Onl y for diabeticpatient s thatar eoverweigh t a sugar restrictionma yb e relevant because of thecontributio n toth etota lenerg y intake fromsuga r(5) .

Formos tdiabetic sth edie t isa difficul taspec to f the treatment (6-9). Although a systematic inventoryo fdiabetics 'dietar ybarrier s islacking , differentbarrier swit h thedie thav ebee n reported.Thes eare :eatin g in social situations,feeling so fhunger ,inconvenienc e of the regimen,th e financial costso f thediet ,lac k ordifficult yo fplanning ,lac k of palatabilityo f thedie tan d limitedpossibilitie s toea tpreferre d foods (7,9-13). Thesebarrier shinde r diabetics inthei rphysica lwell-being ,i n livingwit h otherpeopl eo r inenjoyin g food. Compliancewit h thediabeti cdie t islo w (10,14). Dietarybarrier s experienced bydiabeti c patientma ypartl yb e responsible for thislo wdegre eo f compliance (15).I norde r toimprov e theeffec to fpatien teducation ,Bartlet t (16)suggeste d thatphysician s should identifyhighl yprevalen t barriers that preventpatient s from following theirmedica l advice.Bartlet t suggested modifying the regimena sa possibl e fruitful strategy forpatien teducation . But, Housee t al. (7)showe d that thephysicians 'perceptio no f thedifficul t aspectso f thediabeti c treatment and the reasons fornon-complianc e differ essentially fromth ediabetics 'perceptio no f these.Thi smake s itunlikel y forphysician s toaddres sbarrier s thatar e reallyfel tb ydiabeti cpatients . Therefore,w emad ea systematic inventoryo fpossibl edietar y barriers experienced bydiabeti cpatients .I na previou s study (17)w emad e an inventoryo f thedietar ybarrier samon g 104 insulin-treated diabeticpatients . This inventoryyielde d 10categorie swit h 37differen t sub-categorieso f diabetics'dietar ybarriers .Th edietar yadvic ean d the regimen for insulin-treated diabeticpatient s andno n insulin-treated diabeticsar e different.Therefor e inthi s studyw emad e a systematic inventoryo fdietar y barriersexperience d byno n insulin-treated diabeticpatients . -19-

METHODS

A qualitative cross-sectional studywa scarrie d outamon gno n insulin-treated diabetic patients,o fbot h sexes,varyin g inag ean dduratio no fdiabetes . A qualitativemetho dwa suse dbecaus e sucha metho d issuite d toobtai n an inventoryo fpossibl edietary-barriers .

Questionnaire A selfadministere d questionnairewa sdevelope d inwhic h respondents could describe, inthei row nwords ,situation s inwhic h theyha d experienced barriersbecaus e of theirdiet .Th equestionnair ewa s semi-structured. The questionnaire contained suggestionswit h regardt osituation swher e dietary barriersmigh tb eexperienced ,lik e situationsa thome ,work ,school , meetings, sports,parties ,holiday san d trips.W e added suggestionsa s to certain foods thatmigh t causebarriers ,o r restricted amounts toeat , regularityo featin go r feelinghungry ,an dw e asked respondentst o consider whether theyha d experienced barrierswit h theirdie tth ewee k before the interview. Ina pretes tw e found that some respondentsdi dno tlik e towrit edow n barriers. Instead,the ypreferre d tob e interviewed.T opreven tan ybia s arising fromthi s fact,w eoffere d all respondents thechoic ebetwee na nora l interviewan d amaile dquestionnaire .Fo r the interviewth e samequestionnair e wasused .Th e interviewersuse d thephrasin go f thequestionnaire ,onl yaskin g for clarificationwhe n theanswer swer eunclear .

Population Inth eNetherland sn ogenera ldatabas ewit h thename so fno n insulin-treated diabeticpatient sexists .Als o thepatients 'fil eo fth eDutc hDiabete s Association (DDA)mainl y contains insulin-treated diabeticpatients .Therefor e respondentswer e recruitedb yvariou sways .Ou rpreviou s study indiabetics ' dietarybarriers ,wit h respondents fromth epatients 'fil eo f theDDA ,ha d provided uswit h sixno n insulin-treated respondents (17).Thes e respondents were included inthi sstudy .Furthermor ew epu t severaladvertisement s in localnewspaper san ddistribute d theseadvertisement s intowaitin g roomso f familyphysician san ddieticians .I nth eadvertisement sdiabetic sno t injecting insulinwer easke d toparticipat e inou r study.Fifty-tw ono n insulin-treated diabeticperson s responded tothes e advertisements.Thi smad e the total number of respondents tob e 58.Tabl e 1show sth erespondents ' -20-

characteristicswit ha wid evariatio n inage ,duratio no fdiabete san dwit h both sexes.O f the 58 respondents,4 9fille d inth e self-administered questionnaire andnin ewer e interviewed.Befor eanalysi sal l respondents' questionnaireswer emad eanonymous .

TABLE 1.Respondents 'characteristics ,N=5 8no n insulin-treateddiabeti c patients.

GENDER (Numbero f respondents) Male 23 Female 32 Unknown 3

DURATIONO FDIABETE S (Years+ sd) 5.3 + 5.0 Range (Years) 0.2 - 20

AGE (Years± sd) 51.6± 9.4 Range (Years) 28 - 65 TREATMENT (Numbero f respondents) Onlydie t 26 Oralhypoglycemi cmedicatio n 32

DataAnalysi s Allmateria l received from the respondentswa s typed out.Fro mthi smateria l thedescription swer e selected of situations inwhic h respondentsha d experienced barrierswit h theirdiet .T ocategoriz e thesebarrier s a categorization systemwa sdeveloped .Ou rpreviou s studyamon g insulin-treated diabetic patientsha dproduce da categorization systemwit h 10categorie san d 37sub-categorie s (17).Initiall ythes e categorieswer eused .Onl ywhe n descriptionscoul dno tb ecategorize d intoth eexistin g categoriesa ne w categorywa sadded . Inth een d emptycategorie swer edelete d or nearly empty categorieswer e combinedwit h closely related categories.Th e final categorization-system consisted of 10main-categorie s and 30sub-categories . Thismetho d issusceptibl e tosubjectiv e interpretation.Therefor e twoperson s thatwer e not involved inthi sstud y independently categorized thebarrier s intoth e categorization system.Thei r inter-coder agreement (18)fo r the categorization of thedescription s intoth e 30sub-categorie si s0.81 , indicating that,afte r chanceagreemen t is removed,81 %o f the descriptions were categorized inth e sameway . -21-

RESULTS

Thetota lnumbe ro fdescription so fdietar ybarrier swa s50 6(Tabl e 2).Th e highestnumbe ro fdescription sb yon eresponden twa s39 .Fou rrespondent sdi d notdescrib ean ybarriers .

TABLE2 .Barrier sExperience dwit hth eDiabeti cDie t(1) .

MainCategor y N

1.Restriction si nth eamoun tan dtyp eo ffood s 79 2.Restriction si nusin gspecifi cfood s 64 3.Restriction si nusin gdiabeti cspecialt yfood s 54 4.Reaction sfro mother si nsocia lsituation s 46 5.Barrier swit heatin gan ddrinkin gi nsocia lsituation s 59 6.Physica ldiscomfort ,feeling so fhunge ran dsurfei t 63 7.Barrier sdu et oth erequire dregularit yo featin g 43 8.Disruptio no fnorma lroutine/specia levent s 43 9.Lac ko fdietar yvariet y 2 10.Genera lbarrier s 53 506

1)Respons efro m5 8no ninsulin-treate ddiabetic s

Descriptionso fbarrier swer ecategorize dint o1 0main-categorie s (table 2). Thefirs tthre emain-categorie srelat et oth erestricte dus eo fcertai nfood s andcove r39 %o fal ldescribe dbarriers .I ncategor y1 genera lfeeling so f beingrestricte di nth eus eo ffood swer ecategorize dsuc has :no tbein gabl e toea tfood s-a smuc has -on elikes ,findin gi thar dt oasses sho wmuc ht oea t ofa food ,eatin gmor etha nallowe do fa certai nfoo dwit hpossibl esubsequen t feelingso fdiscomfor to rfeelin goblige dt oea tcertai nfoods .I ncategor y2 barrierswer eplace dtha tar efel tbecaus eo fth erestricte dus eo fspecifie d foods.Suc hfood sar ehig hstarc hfood sa spasta ,rice ,potatoe san dpot-pies , vegetableso rfruits ,pulse so rhig hfa tfoods .Categor y3 relate st odiabeti c specialtyfood stha tar econsidere dt ob ebad-tasting ,o fa ba dquality ,har d toge to rexpensive .On efift ho fal lbarrier swa sclassifie di nth efourt h andfift hcategorie .Thes ebarrier srelat et oothe rpeople .Barrier sar e duet oth ereaction so fothe rpeople ,suc ha sa complet edisregar do fth e diabeticdiet ,o rexcessiv econsideration san dremark stha tals oar e consideredtroublesom e (Category4 )o rpeopl eregre ttha tthe yca nno tea t whatan dwhe nothe rpeopl eea t(Categor y 5).Categor y6 contain s6 3barrier s expressingphysica ldiscomfort ,feeling so fhunge ran dsurfeit .Patient s -22-

describedtha t theyca nno tea twhil e feelinghungry ,o r they report feelings of surfeit.Th edie twa sals o reported nott oagre ewit h the requirements set byothe r physicalproblem so rdiabetic sdescrib e that thedie tmake s them feel unwell.Th edefine dquantitie s inth edie tcaus ebarrier sbecaus e thesed o not alwaysagre ewit h thephysica l activitieso fa diabetic .Lastl ybarrier swer e reportedbecaus eo f thedifficult y tolos eweight .Categor y 7,wit h 43 barriers, relatest obein g required toea t regularly. Incategor y 8,wit h 43 barriers,th edifficultie s tocop ewit h routinedisruption so r special events were categorized.Categor y 9,wit h twobarriers ,relate st oa lack ofvariet y in food intakedu e toth eadvise ddiet .Th e lastcategor y (10)comprise s twelvegenera l remarkso nho wtroublesom e having adie tca nbe .Furthermore , thiscategor y contains fourbarrier so nth e financial costso f thedie tan d twelvebarrier sexpressin g thathavin ga die t isinconvenien t for other people. Furthermore 25barrier swer e categorized inthi smain-categor ywher e diabetics state that they findthei rdie tunclear ,o r that they feel insecure because of theirdiet .

Inou rpreviou s studyamon g insulin-treated diabeticpatient s (17)3 7 sub-categorieswer euse d toclassif yal l information,wherea s inthi sstud y 30 sub-categorieswer eused .Difference sbetwee n sub-categoriesuse d inthi s studyan d inth epreviou s studypatient sar edisplaye d intabl e 3.

DISCUSSION

Manybarrier s found inthi sstud y relate toth ediabetics 'perceptio n ofbein g restricted infood st ochoos e from.The y considered sugar-containing foodso r high fat foods forbidden,o r they felttha tthe ydepen d on lesspreferre d diabetic specialty foods.A s there aren o forbidden foods fordiabeti c patientsan d asdiabetic sar eno t required toconsum ediabeti c specialty foods thesebarrier sar epreventable . Thedie t ismean t tocontribut e toth ephysica lwell-bein g ofdiabeti c patients.W e founddescription so fbarrier s indicating that thedie t cangiv e rise to feelingso fphysica l discomfort,lik e feelinghungry , surfeito r difficulties tomanag e thedie twhil ehavin ga nadditiona ldisease .Reporte d feelingso fhunge r causedb ya n intendedweigh t lossca nno tb e prevented. But, thedie t could provide the required energy needs ifweight loss isno t aimed at (13).Incidenta l feelingso fhunge r or surfeitma y stillb e caused by theprevailin gda y toda yvariabilit yo fo f required energy intake (19-21)an d -23-

TABLE 3.Difference si ncategorie suse dt ocategoriz ebarrier s reportedb yinsulin—treate dan dno ninsulin—treate d diabeticpatients .

MAIN CATEGORIES Sub-categories uniquelyuse dt o categorize Sub-categories uniquelyuse dt o categorize tha response amongno n insulin-treated diabetics responseo f insulin-treated diabetics

CATEGORY1 . 1.2.Bein g restricted inth eus eo f special RESTRICTIONS IN nutrients [11] AMOUNTAN DTYP E 1.3. It'shar dt o assessho wmuc h toea to fa OF FOODS food [6]

CATEGORY 2. 2.7.Restriction s inth eus eo fbrea d (0] RESTRICTIONS IN 2.8.Restriction s inth eus eo f fatty foods 2.8.Restriction s inth eus e of fattymeat s 12] USING SPECIFIC [17] 2.9.Restriction s inth eus e ofbutte r or fatty FOODS sauces [6] 2.10.Restriction s inth eus eo f fatty snacks [1]

CATEGORY 3. 3.1.Bein g restricted todiabeti c specialty RESTRICTIONS IN foods [2] USING DIABETIC SPECIALTY FOODS

CATEGORY 4. 4.1.Other s don't considerm ydie to rthe y 4.1.other sdon' t considerm ydie t [4] REACTIONS FROM pay excessive attention tom y diet [46] 4.2.Other smak e remarksabou tm ydie t orpa y OTHERS INSOCIA L excessive attention [24] SITUATION 4.3.Othe rpeopl ebu ym especia l foods [6] 4.4.othe rpeopl e feelba dno t tohav ebough t special foods [4]

CATEGORY 6. 6.3.Th edie tdoesn' t agreewit h otherphysica l PHYSICAL problems Ihave ,becaus e ofth edie tI DISCOMFORT,HUNGE R feel sick [8] AND SURFEIT 6.4.Th edefine dquanititie s inm y dietd ono t agreewit hm y activities [6] 6.5. It ishar dt ohav e to loseweigh t [13]

CATEGORY 8. B.2. It is inconvenientwhe nthing sdon' t go DISRUPTIONO F thewa y they areplanne d (19] NORMALROUTIN E

CATEGORY 9. 9.2. It isdifficul t tous eexchang e lists [7] LACKO F DIETARY VARIETY

CATEGORY10 . 10.4.Th e requirementso fth edie t areno t GENERAL BARRIERS clear,I fee l insecure about thediet , iti shar d toasses sho wmuc ht oea t of afoo d [31J

Nuaberbetwee nbracket s []indicate sprevalenc eo fthes esub-categorie si nth erespectiv estudies .Tota lnuabe ro f barriers inth estud y among non insulin-treateddiabetic swa s 506,aaon ginsulin-treate ddaibetic s542 . -24-

a dietno tallowin g for suchvariability .Th ebarrier so featin g insocia l situationsdemonstrat e thateatin g isno tdon e in isolation.Th edie tma y be incompatiblewit hothe r peoples'foo duse ,othe r peoples'foo doffer san dwit h thevariabilit y in their timeschedule .

From this study it isno tpossibl e todra wconclusion sabou t theprevalenc e of thedifferen tbarriers .Th e studypopulatio nwa s self-selected and therefore not representative of thegenera lno n insulin-treated diabeticpopulation . This studywa sa qualitativ e study,suite d toobtai na n inventoryo f possible dietarybarriers .Mos to f the sub-categoriesuse d inthi s studyan d thoseuse d inou rpreviou s studyamon g insulin-treated diabeticsar e the same.However , somene w subcategorieswer eadde d todescrib e thebarrier sexperience d byno n insulin-treated diabeticpatients .Thes e sub-categoriesdemonstrat e that for non insulin-treated diabetics theirdie tno talway sagree swit hothe r physical problems orwit h their energy-needs.Als o ane wsub-categor ywa sadde d expressing thatno n insulin-treated diabetics feel insecureabou t their diet orexperienc e theirdie tt ob eunclear .I t remainst ob e studiedwhethe r these differencesar e reallyt ob eattribute d todifference sbetwee n insulin-treated andno n insulin-treated diabeticpatients .

This study showsth eadvise ddie to r thediabetic' sperceptio no f thisdie t to havedifferen t consequences.A diabetic patientma yfee ldeprive d froma favorite food,fee lhungr yo r supersatiated ora diabeti cma y feel restricted incontac twit hothe rpeople .Thes e- unintende d - side-effectso f thedietar y treatmentwil lmak e thedie thar d to follow.A suggestionmad eb yBartlet t (16)t oimprov epatien teducatio nwa s tomodif y the regimenwhe n it ishar d to follow.Fro m thisstud y severalbarrier s standou t thatca nb e copedwit h by modifying the regimeno rb ymodifyin gpatients 'perceptio no f the regimen. Barriersaris ebecaus e certain foodsar e considered forbiddenwherea s other foodsar e considered amus t toeat .Suc hbarrier s canb eprevente d by stressing thenon-existenc e of forbidden foodsan db y teachingdiabetic sho w to includepreferre d foods inthei rdiet .Othe r barriers requiremodifyin g the treatment, like thebarrier sdu e tounnecessar yenerg y restrictionso r inflexiblediets ,leadin gt o feelingso fhunge r or surfeit.T opreven t these barriersdiet swit h flexibility ineating-time s andamount s toea tar e essential. Furthermore,whe na diabeti c patientha sothe r diseasesbeside s havingdiabete s specialattentio n should begive nt oth e requirementso f the additionaldisease . -25-

References

1.Hanse nBC .Dietar yconsideration sfo robes ediabeti csubjects .Dia bCar e 1988;11:183-188. 2.Wheele rML ,Delanth yL ,Wylie-Roset tJ .Die tan dexercis ei nno n insulin-dependentdiabete smellitus :Implication sfo rdietitian sfro mth e NIHConsensu sdevelopmen tconference .J A mDie tAs s1987;87:480-485 . 3.Skyle rJS .Dietar ymanagemen to fdiabete smellitus ,in :Peterso nCM . Diabetesmanagemen ti nth e80's :Th erol eo fhom ebloo dglucos emonitorin g andne winsuli ndeliver ysystems .Praege rScientific ,Philadelphia ,1982 . 4.Kisseba hA ,Schectma nG .Polyunsaturate dan dsaturate dfat ,cholestero l andfatt yaci dsupplementation .Dia bCar e1988;11:129-142 . 5.Man nJI .Simpl esugar san ddiabetes .Dia bMe d1987;4:135-139 . 6.Lockwoo dD ,Fre yML ,Gladis hNA ,His sRG .Th ebigges tproble mi ndiabetes . DiabetesEducato r1986;12:30-33 . 7.Hous eWC ,Pendleto nL ,Parke rL .Patients 'versu sphysicians 'attribution s ofreason sfo rdiabeti cpatients 'non-complianc ewit hdiet .Dia bCar e 1986;9:434. 8.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 9.Jenn yJL .Difference si nadaptatio nt odiabete sbetwee ninsulin-dependen t andno ninsulin-dependen tpatients :implication sfo rpatien teducation . PatientEducatio nan dCounselin g1986;8:39-50 . 10.Ar yDV ,Toober tD ,Wilso nW ,Glasgo wRE .Patien tperspectiv eo nfactor s contributingt ononadherenc et odiabete sregimen .Dia bCar e 1986;9:168-172. 11.Wes tKM .Die ttherap yo fdiabetes :a nanalysi so ffailure .An nIn tMe d 1973;79:425-434. 12.Broussar dBA ,Bas sMA ,Jackso nMY .Reason sfo rdiabeti cdie tno n complianceamon gcheroke eindians .J Nut rEdu c1982;14:56-57 . 13.Lea nMEJ ,Jame sWPT .Prescriptio no fdiabeti cdiet si nth e1980s .Lance t 1986;1:723-725. 14.Glan zK .Complianc ewit hdietar yregimens :it smagnitude ,measuremen tan d determinants.Pre vMe d1980;9:787-804 . 15.McCau lKD ,Glasgo wRE ,Schafe rLC .Diabete sregime nbehaviors :predictin g adherence.Me dCar e1987;25:868-881 . 16.Bartlet tEE .Behaviora ldiagnosis :a practica lapproac ht opatien t education.Patien tcounselin gan dhealt heducatio n1983;1:29-35 . 17.Niewin dAC .Diabete san ddiet :Foo dchoices .PhD-thesi sAgricultura l UniversityWageningen ,1989 . 18.Cohe nJ .A coefficien to fagreemen tfo rnomina lscales .Educationa lan d PsycolMea s1960;20:37-46 . 19.Gallaghar ,A. ,Henderson ,W. ,Abraira ,C .Dietar ypattern san dmetaboli c controli ndiabeti cdiets :a prospectiv estud yo f5 1outpatien tme no n unmeasuredan dexchang ediets .J A mCol lNut r1987;6:525-532 . 20.Christense nNK ,Terr yRD ,Wyat tS ,Picher tJW ,Loren zRA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Dia bCar e1983;6:245-250 . 21.Henr yCL ,Heato nKW ,Manhir eA ,Harto gM .Die tan dth ediabetic :th e fallacyo fa controlle dcarbohydrat eintake .J Hu mNut r1981;35:102-105 . -26-

CHAPTER 4

COPING WITH THE DIABETIC DIET: MANAGING MULTIPLE GOALS

RolandD .Friele ,Anj aC .Niewind , Johanna M.P. Edema,Josep hG.A.J . Hautvast

ABSTRACT

Diabetic patients look uponth edie ta sa problemati c aspecto fthei r treatment.Thi s study analysesth eway sdiabeti c patients copewit hth e barriers experienced with their diet.Dat awer e collected usinga semi-structured questionnaire,i nwhic h10 4insulin-treate d diabetic respondents reportedho wthe yactuall y copedwit hbarrier s they experienced with their diet.27 2description so fway st ocop ewit ha diet-relate d barrier were analyzed. Incopin gwit h these barriersa diabeti cno tonl y considers diet,bu tals ophysica l well-being, social relationsan dfoo d preferences.I t isdiscusse d thatdietar y education should provide diabetics with optionst o effectively manage existing incompatibilities between health, social relations,foo d preferencesan dth ediet .

INTRODUCTION

Inorde r toregulat e blood glucose levels insulin-treated diabetic patients are required toadequatel y manage insulinuse ,physica l activityan dfoo d intake.Th eshor t term effecto fa nimpaire d regulation ishypoglycemi ao r . Inth elon g runimpaire d regulationma yresul t inmor e severe health complications.I ti simportan t thatdiabetic s spreadou tthei r food intake over thecours eo fth eday ,t oavoi d irregularities inbloo d glucose levels.Diabetic s alsoar eadvise d tolimi t their fat-intake toon ethir do f the total energy intake inrespec tt othei r higher risko fcardiovascula r diseases (1-4). Generally diabetic patientswil l receivea dietar y advice with directions fordistributio n ofmeal s over thecours eo fth eday ,an dfo rth e nutritional compositiono fthei r . Several studieshav e shown thatdiabetic s findth edietar y prescriptionth e mostdifficul t aspecto fth etreatmen to fthei r disease (5-10)an dtha tth e rateo fcomplianc e islo w(11-13) .Hous ee tal . (9)foun d that accordingt o physicians lacko fmotivatio n isth eprim e reasonfo rnon-compliance .However , -27-

in the same studyman ydiabetic s indicated environmental and somatic barriers as theprim e reason fordietar y non-compliance.Othe r authorswh o studied the reasons fordietar y non-compliance, from thepatient' s perspective, conclude that dietary barriers play an important part.Thes e barriers are:Eatin g in social situations, feelings ofhunger , inconvenience of the regimen, lack or difficulty ofplanning , lack ofpalatabilit y of thedie t and limited possibilities toea t preferred food (6-9,11,14-16).Thes e barriers impinge upon the ability toliv e anorma l life.Therefor e thesebarrier s are relevant to thewa y inwhich diabetic smanag e their diet and try tolea d anorma l life. Ina previou s studya n inventorywa smad e of thebarrier s insulin-treated diabetics experiencewit h theirdie t (17).Th eai mo f this study ist o subsequently analyze thepossibl eway s insulin-treated diabetics copewit h these barriers.W e focuso nwha t diabetics actually do ina situation inwhic h they experience these dietarybarriers .

METHODS

A qualitative cross-sectional studywa s carried outamon g insulin-treated diabetics ofbot h sexes,varyin g inag ean d induratio n of thediabetes . A qualitative method isparticular y suited toobtai n acomplet e inventory of possible coping strategieswit hdietar y barriers.B y including awid e range in age,duratio n ofdiabete s and both sexes,bia s arising from selection of respondents was prevented.

Questionnaire A questionnaire wasdevelope d inwhich respondents could describe in their own words,ho w theyha d actually copedwit hdietar y barriers.First , respondents were asked todescrib e situations inwhic h theyha d experienced suchbarriers . In thequestionnair e we suggested awid e range ofpossibl e situations where barriers could beexperienced , athome ,work , school,meetings ,sports , parties,holiday s or trips.W e added suggestions as tocertai n foods that might cause barriers,o r the restricted amounts toeat ,th e regularity of eating or feelings ofhunger ,an d asked respondents toconside rwhethe r they had experienced barrierswit h their diet thewee k before. Subsequently respondents were asked todescrib e what theyha d done about these barriers. In a pretest itha dbee n found that some respondents dono t like towrit e down barriers and their reactions. Instead,the ypreferre d tob e interviewed. To -28-

prevent anybia sarisin g from this fact,w e offered all respondents the choice betweena nora l interviewo ra maile dquestionnaire .Fo r the interview,th e interviewersuse d thephrasin g of thequestionnaire .Fo r eachdietar y barrier theyaske d the respondent's reaction totha t specific asked. Clarifications were asked onlywhe n theanswe rwa sno tclear .

Subjects Subjectswer e a random sampleo f 153patient-members ,age dbetwee n 20-65 years,o f theDutc hDiabete sAssociatio n (DDA)livin g inth e surrounding area ofWageningen ,th eNetherlands .Ther e isn o reasont oassum e that diabetics living inthi sare awoul d copedifferentl ywit hdietar ybarrier s than diabetics livingelsewhere .Th eDD Aha s38,00 0patien tmembers ,80-90 %o f whichar e insulin-treated. The totalnumbe r of insulin-treated diabetics in theNetherland s isestimate d atabou t100,000 .Th equestionnaire swer e mailed by themailin gdepartmen to f theDDA . Inthi swa y theanonymit yo f the respondentswa sguaranteed . Inth emailin g itwa spointe d out thata n interviewwoul db epossibl ea sa nalternativ e toth ewritin g downo fanswers . A pre-stampedenvelop ewa s enclosed for the returno feithe r thequestionnair e or the request fora n interview.Th e firstmailin gwa s followedb y four reminders, inorde r to increase response-rate (18).Th e final reminderwa sa replycar d onwhic h respondents could state the reasonswh y theydi dno twan t toparticipat e inth e study,o r theycoul ddescrib e oneo rmor ebarriers . Reactionswer e received from 137ou to f 153subject s (90%). Of these 137 subjects, 104wer e insulin-treated diabetics allo fwho mwer e included inth e study (68%). Of theothe r 33subject s8 wer eno t includedwhil e theydi d not havediabete so rha dnon-insuli n treateddiabetes ,4 wer e too ill to participate,3 ha ddie d and 2coul d notb e reached bymail ,wherea s 16 subjectswer eno tabl e toparticipat e inth e studybecaus e theycoul dno t find the time.Tabl e 1 showsth epopulatio nwit ha wid evariatio n inage ,duratio n ofdiabete san dwit h both sexes.O f the 104 respondents,1 9wer e interviewed. From6 3 respondentson e ormor e descriptions of coping strategieswer e obtained. -29-

TABLE1 . Subjects'characteristics .

TOTALPOPULATIO N POPULATION DESCRIBING (N-104) COPING STRATEGIES (N-63)

GENDER: males 50 25 females 53 38 unknown 1

TYPEO FRESPONSE : Questionnaire 75 44 Interview 19 19 Replycar d 10

DURATIONO FDIABETE S (Years): Maximum 48 48 Minimum 0.8 0.8 Median 11 11

AGE (Years): Maximum 65 64 Minimum 19 19 Median 38 38

Data analysis Allmateria l received fromth e respondentswa s typedout .Fro m thismateria l descriptionswer e selected ofho wth e respondentsha d reactedwhe n experiencing abarrie r due toth ediet .A system tocategoriz e the response wasdeveloped .Thi s resulted ina categorization systemconsistin g twomai n categoriesan d twelve sub-categories (Table2) . Thismetho d issusceptibl e tosubjectiv e interpretation.Therefor e twoothe r persons,no t involved inthi sstudy ,wer easke d toindependentl y categorize the coping strategies intoth e categorization systemtha twa sdeveloped .Thei r inter-coder agreement (19)fo r classification of thedescription s intoth e twelve subcategories is0.74 ,indicatin g that,afte r chance agreement is removed,th e categorization-system adequatelycover s74 %o f thedescribe d coping strategies.Eac hdescriptio nwa s finallycategorize d by the two first authors.Wheneve r classificationdi dno tmatch ,i twa s reconsideredunti l a final classificationwa sagree dupon . -30-

TABLE2 .Categorizatio no f27 3description so fcopin gstrategie swit hdietar y barrierso fth ediabeti cdiet .

CATEGORIES NUMBERO FDESCRIPTION S

Ä ADHERINGT OTH ERESTRICTION SO FTH EDIET . Al Adheringt oth erestriction so fth edie t 29 A2 Adheringt oth erestrictio no fth edie ti nspecia lsituation s 32 A3 Avoidanceo fsituation si nwhic hadherenc et oth edie t maycaus ebarrier s 18 A4 Avoidingcertai nfood saltogethe r 15 Total 94 B MODIFYINGFOO DUS ET OFULFI LOTHE RGOAL SBESIDE STH EDIET . Bl Modifyingfoo dus et ofee lphysica lwel l 107 -Modifyin gcarbohydrat eintak et ofee lphysicall ywel l(47 ) -Modifyin gfoo dintake ,withou tmodifyin gcarbohydrat eintake , tofee lphysicall ywel l(5 ) -Tak efoo dalong ,t ofee lphysicall ywel l(26 ) -Modifyin ginsulin-dosag eo rmeasurin gbloo dglucos elevels , tofee lphysica lwel l(13 ) -Othe rpeopl emodif yfoo dus et omak ea diabeti cfee l physicallywel l(16 ) B2 Modifyingfoo dus et opla ya desire dsocia lrol e 25 B3 Modifyingfoo dus et oea tpreferre dfoods , ort oea tfood si npreferre dquantitie s 40 B4 Deviatingfro mth erestriction so fth edie t 7 Total 179

RESULTS

Thetota lnumbe ro fdescription so fcopin gstrategie si s27 3(Tabl e 2).Th e highestnumbe ro fdescription sfo ron eresponden twa s19 .Th edescription s weresubdivide dint otw omai ncategorie s (Aan dB) . The9 4description si nth efirs tmai ncategor y (A)ai ma tdietar yadherence . Insub-categor yAl ,2 9statement swer eclassifie dwhic hsho wtha tpeopl ewil l adheret odifferen taspect so fth ediet .Thes erespondent stak ecar etha t mealsar eprepare dproperl yan dthe ycalculat eth equantitie st oeat .The yd o notea ta ttime swhe nthe yar eno tallowe dt oeat ,eve ni fthe yfee lhungry . Theyd oea twhe nthe yhav eto ,eve nwhe nfeelin galread ysatiated .I n sub-categoryA2 ,3 2description swer eclassifie do fdietar yadherenc eo n specialoccasions ,suc ha sbein gou to nvacations ,eatin gwit hothe rpeople , partieso rschool .Thes erespondent sea tdifferen tfood stha nothe rpeople , theyea ta tdifferen ttime so rthe yrefus efoo doffere db yothe rpeople .Th e thirdcategor y (A3)contain s1 8description sb yrespondent swh oavoi d situationswher eadherenc et oth edie tma yprov edifficult .Thes esituation s mainlyaris ei nth ecompan yo fothe rpeople .Th efourt hcategor y (A4)contain s -31-

15description s ofpeopl ewh oavoi d certain foodsaltogether ,suc ha ssugar , pastaso rdrinkin galcohol . The secondmain-categor y (B)contain s17 9description s concerning modifications of foodus e tofulfil lothe r goalsbeside s thediet .Thi s main-categoryha s four sub-categories.Description s inth e firstsub-categor y (Bl)relat e tocopin gwit hbarrier so fphysica ldiscomfort .Physica l discomfortma y consisto f feelingso fhunge r and surfeito ro f irregular and extremeblood-glucos e levels.Th edescription s showtha t thesebarrier s canb e the resulto fvariabilit y inphysica l activityo r of changes inth eweather . To feelphysicall ywel l people change theamoun to f foodthe yeat ,the yomi t mealso r eatextr a sugar.Als ow e founddescription so fpeopl eno twantin g to change their carbohydrate intakean d thereforedrinkin gwater ,eatin g cucumber,fibr e rich foodo r fatty foods,t oovercom e feelingso fhunger . People take foodwit h them,t opreven t lowblood-glucos e levelso r tohav e something toea twhil ehungry .Diabetic smeasur ebloo d glucose levelsan d change insulindosage .The yd o sot omanag e achang e in food intake or to manageunusua l situations.Othe rpeopl eals oassis t indecidin gwhe nan dwhic h food tous e forphysica lwell-being .Sometime sthi smean s thatothe r people make thedecisio nwhe nan dwha tt oea to rwher e togo .Th e second sub-category (B2)describe sho w respondentsmodif y foodus e for socially impelled reasons. Theypostpon emeals ,accep t food fromothers ,tr yt ofi t in,tak e careno t to cause inconveniences toother so r tryno tt odra wattention .Description s in the third sub-category (B3)refe r toth eeatin go fpreferre d foodso r eating of foods inpreferre d quantities.Food smentione dher ear e cold cuts, sweet foods,vegetaria n foods,ice-cream ,alcoholi cdrinks ,por k and creamcheese . Noteworthy are theeffort sb y some respondents tob eabl e toea t certain dishes sucha sspaghetti ,macaron i orhotchpotc h ina quantit ymatchin g the quantitynormall y consumedb yhealth ypeople .Th e respondents include carbohydrate allowances fromothe r elementso f themeal , combine several adjacentmeal so r justea tmor e inorde r toea t these foods inth epreferre d quantities.Al l three sub-categories (Bl,B2,B3)contai ndescription s of coping strategieso f respondentsacknowledgin g theboundarie s setb y the regimenbu t alsodescription s ofpeopl e skippingmeals ,eatin g foodsconsidere d forbidden or overeating.

The final sub-category,B4 ,contain s7 statement so fpeopl e justdeviatin g fromth ediet .The y state that theycanno taffor d thediet ,o r they state that they justd ono twis h toadher e toit . -32-

DISCUSSIGN

Theobjec to f this studywa s to findou twha tdiabetic sd owhe n experiencing dietarybarriers .Fro mthi s study itbecome s clear that thesebarrier s are copedwit h indifferen tways . They canb e copedwit hb y trying tocompl ywit h thediet ,bu tals ob ymodifyin g fooduse .Whe nmodifyin g fooduse ,diabetic s consider theirphysica lwell-being ,socia lwell-bein g and their food preference. Theway sdiabetic smanag e theirdietar yadvic ehav ebee n studiedusin g the concept of compliance (12,13,20).A compliantperso n isknow n tohav e followed thedietar yadvice .A non-compliantperso n isknow nno tt ohav e followed the dietaryadvice .Littl e isknow nabou tth ealternative schose nb ythi sperso n instead (21,22).Thi sstud y showstha tcopin g strategieswit hdietar y barriers which canno tb e classified ascomplian t are characterized bydeliberat e attempts to feelphysicall ywell , topla ya desire d social roleo r toenjo y food.Applyin g theconcep to fnon-complianc e tothes e coping strategies denies theseattempts .Conra d statestha t froma patient' sperspectiv e the issue is one of self-regulation (23).Thi s isespeciall y relevant fordiabetics .The y themselveshav e topla ya n important role inmanagin g theirdiseas e(24) . Thereforeusin g theconcep to fdietar y compliance tostud y theway sdiabetic s manage theirdie t seemsinadequate .

The coping strategies,foun d inthi sstud ydemonstrat e that it isno t always possible tocop ewit h thebarrier so fth edie t insuc ha wa y that these barriersar e really resolved. Several coping strategiesdemonstrat e a necessity tochoos ebetwee ndifferen t objectives.Complianc ewit h thedie tma y imply thata diabeti cwil l feelhungry ,o r super-satiated, thath ewil l have to refrain fromeatin gpreferre d foodso r stopseein gothe rpeople .O n the otherhand ,yieldin g toth enee d forphysica lwell-being ,ma y implya deviation from thediet .Yieldin g toth edesir e toea tpreferre d foodso r to keepu p relationswit hother sma yendange r somatichealth .Suc h barrierswil l give riset one w situationswhic hwil l againb eappraise d asproblematic .

Diabetic patients should beabl e toself-manag e the regulationo f their blood-glucose levelsb ymatchin g foodchoice ,physica l activity and insulin use.A dietaryadvic e should enablediabetic s tod o so.Th epossibl e discrepancy thatwa s foundbetwee ndietar y adherence andmanagin g food intake to feelphysicall ywel l ist ob eprevented . Furthermore,th edie t isno t -33-

meantt o restrict people inthei r enjoyment of food or keepingu p relations with others.Still ,th ewa y tocop ewit h certain barriers of thedie t may require diabetics to choose between either thedietar y advice or the enjoyment of food and social relations.Diabetic s should beprovide d with realistic options to copewit h the existing incompatibility between health, social relations and enjoying food on theon ehan d and thedie t on the other hand.

ACKNOWLEDGMENTS

This studywa s supported by grants from theMinistr y ofWelfare ,Healt h and CulturalAffairs ,th eHague ,an d theAgricultura l UniversityWageningen , the Netherlands.W e thank theDutc hDiabeti cAssociatio n forthei r help in recruitment of respondents,Mrs .S.K . Kroes-Lie andMs .M . Eimers for assistance with the categorization of thedata .W e appreciated the helpful comments ona nearlie r version of thispape r byDr .N.G .Rölin gan dDr .F . van der Horst.

LITERATURE CITED

1.Crapo ,P.A . Carbohydrate inth ediabeti c diet.J A m CollNut r 5:31-43,1986. 2. Diabetes andNutritio n Study Groupo f the EuropeanAssociatio n for the Study ofDiabetes-1988 .Nutritiona l recommendations for individuals with diabetes mellitus.Dia bNut rMeta b 1:145-149,1988. 3.Mann ,J . Dietary advice fordiabetics :A perspective from the United Kingdom. JA m CollNut r 5:1-7,1986. 4.Heine ,R.J . andJ.A .Schouten .He tdiabetesdieet :nie t andersda n voeding voor gezonde mensen.Ne d TijdschrGeneesk d 128:1524-1528,1984. 5.Jenny ,J.L .A comparison of four agegroups 'adaptatio n todiabetes .Ca nJ Public Health 75:237-244,1984. 6. Jenny, J.L. Differences inadaptatio n todiabete s between insulin-dependent and non-insulin-dependent patients: implications for patient education. Patient Educ Counsel 8:39-50,1986. 7.Ary ,D.V. , D. Toobert,W .Wilso n and R.E.Glasgow . Patient perspective on factors contributing tonon-adherenc e todiabete s regimen.Dia b Care 9:168-172,1986. 8.Glasgow, R.E. ,K.D .McCau l and L.C.Schäfer .Barrier s to regimen adherence among personswit h insulin-dependent diabetes.J Beha v Med 9:65-77,1986. 9. House,W.C. ,L .Pendleto n and L.Parker .Patients 'versu s physicians' attributions of reasons fordiabeti c patients'non-complianc e withdiet . Diab Care 9:434,1986. 10. Lockwood,D. , M.L.Frey ,N.A . Gladish andR.G . Hiss. Thebigges t problem indiabetes .Th e Diabetes Educator 12:30-33,1986. 11.West ,K.M . Diet therapy ofdiabetes :a nanalysi s of failure.An n Intern Med 79:425-434,1973. 12. Glanz, K.Complianc ewit hdietar y regimens: itsmagnitude ,measuremen t and determinants. PrevMe d 9:787-804,1980. -34-

13.Christensen ,N.K. ,R.D .Terry ,S .Wyatt ,J.W .Picher tan dR.A .Lorenz . Quantitativeassessmen to fdietar yadherenc ei npatient swit h insulin-dependentdiabete smellitus .Dia bCar e6:245-250,1983 . 14.Broussard ,B.A. ,M.A .Bas san dM.Y .Jackson .Reason sfo rdiabeti cdie tno n complianceamon gcheroke eindians .J Nut rEdu c14:56-57,1982 . 15.Nuttal ,F.Q .Die tan dth ediabeti cpatient .Dia bCar e6:197-207,1983 . 16.Lean ,M.E.J ,an dW.P.T .James .Prescriptio no fdiabeti cdiet si nth e 1980s.Lance t723-725(1986:1) . 17.Niewind ,A.C .Diabete san dDiet :Foo dchoices .Thesis ,Wageninge n AgriculturalUniversity .Th eNetherlands ,1989 . 18.Kanuk ,L .an dC .Berenson .Mai lsurvey san drespons erates :a literatur e review.J Marke tRe s12:440-453,1975 . 19.Cohen ,J .A coefficien to fagreemen tfo rnomina lscales .Educationa lan d PsycolMea s20:37-46,1960 . 20.Webb ,K.L. ,A.J .Dobson ,D.L .O'Connol ,H.E .Tupling ,G.W .Harris ,J.A . Moxon,M.J .Sulwa yan dS.R .Leeder .Dietar ycomplianc eamon g insulin-dependentdiabetics .J Chro nDis .37:633-642,1984 . 21.Stimson ,G.V .Obeyin gdoctor' sorders :a vie wfro mth eothe rside .So cSe i Med8:97-104,1974 . 22.Trostle ,J.A .Medica lcomplianc ea sa nideology .So cSe iMe d 27:1299-1308,1988. 23.Conrad ,P .Th eexperienc eo fillness :recen tan dne wdirections .I nTh e experiencean dmanagemen to fchroni cillness .J.A .Rot han dP .Conrad , eds.Researc hi nth esociolog yo fhealt hcare ,volum e6,107-146(1987 )JA I Pressinc .London . 24.Glasgow ,R.E. ,W .Wilso nan dK.D .McCaul .Regime nadherence :a problemati c constructi ndiabete sresearch .Dia bCar e8:300-301,1985 . -35-

CHAPTER 5

DIABETICS' DIETARY BARRIERS: HARD TO OVERCOME

R.D. Friele,A.C .Niewind ,J.G.A.J .Hautvast ,J.M.P .Edem a

ABSTRACT

Inthi s studyw einvestigate d dietarybarrier s among7 2recentl ydiagnose d insulin-dependent diabeticsan dth echang ei nprevalenc eo fthes e dietary barriersbetwee n recently afterth ediagnosi so fdiabete san don eyea r later. We also studiedth eway sdiabetic s copewit hdifferen tdietar ybarriers .Th e mostprevalen tdietar ybarrier swer e feelingso fphysica ldiscomfor t (feeling unwell, feeling hungry), restrictionsi nfoo d selection (restrictedt osmal l amountso fa food ,wantin ga foo dexclude db yth ediet )an dth eregularit yo f eating.Les sprevalen twer e barriers relatedt oeatin gi nsocia lsituations . No changewa sfoun d inprevalenc eo fbarrier s aftera on eyea r follow-up.Th e barrier 'feelinghungr ywhil eno tallowe dt oeat 'i sleas tofte ncope dwit hb y compliancet oth ediet .Th ebarrier s relatedt oeatin gi nsocia l situations and regularityo featin gar emos tofte ncope dwit hb ycompliance .Thi s study demonstrates thatdietar ybarrier sar eno teasil ysolve db ydiabeti c patients themselves.Therefore ,i ti simportan t thatdiet sfi ti nwit hth e irregularitieso fdail y life,foo dpreference san dsocia lsituations .

INTRODUCTION

Thediagnosi so fdiabete swit hth esubsequen t regimen requiresmajo r changes inlife-styl e formos tpeople .A ninsulin-dependen tdiabeti c patientha st o coordinate injected insulin,physica l activityan dfood-intake . Furthermore thepatien t isadvise d toea tcarbohydrate-ric h foodswit ha lo wglycémi e index (1),an dt olimi tdail y sucrose intaket oa maximu mo f5 0g/da y (2). The liftingo fth ecomplet eba no nadde d sugar isrelativel y recent (3). Afa t intakeo f30 %o ftota lenergy ,a thir do fwhic hma yb esaturated ,i sexpecte d to limitth eincrease d risko fcoronar yhear tdiseas e(1) . Compared toothe raspect so fth ediabeti c treatment compliancewit hth e diabetic dieti slo w(4,5) . Several studies reportth edie tt ob eth emos t difficultaspec to fdiabeti c regimen (4,6-9).Amon gth edietar y barriers reportedar efeeling so fhunge ran dphysica ldiscomfort ,limite d opportunities toea tpreferre d foods,inconvenienc eo fth eregime nan dlac ko rdifficult yo f -36-

planning,eatin g insocia l situationsan d lacko fpalatabilit y of thedie t (4,9-15).Barrier s resulting fromth ediabeti c dietar e suggested asa n explanation fordietar ynon-complianc e (16).Furthermor e thesebarrier s impingeupo n someo fth eessentia l elementso fhuma n functioning sucha s physicalwell-being , theenjoymen to f foodan d establishing and maintaining social relations.Identificatio n of thesebarrier san do f theprevalenc e of thesebarrier s isa first step inth epreventio no f them. Ina qualitativ e studyo n thecopin g strategieswit h thebarrier so f the diabeticdiet ,i twa s found that these strategiesar eno talway seffectiv e in overcoming thedietar ybarriers .Als o itwa s found thatdietar ybarrier swil l notnecessaril y lead todietar ynon-compliance .Th e coping strategieswit h dietarybarrier s reflectdiabetics 'attempt s tocompromis ebetwee n the restrictionso f thedie to n theon ehand ,an d theirdesir e tofee l physically well, tokee pu p social relationsan d toenjo y foodo n theothe rhan d (Chapter 4).

Little isknow no f theprevalenc eo fdietar ybarrier samon g recentlydiagnose d diabetics,no r isi tknow nwhethe r theprevalenc eo f thesebarrier swoul d decrease after the firstyea r ofdiabetes .Als o iti sno tknow nwhethe r certaindietar ybarrier sar emor e frequently copedwit hb y complying toth e restrictionso fth edie t thanothe rbarriers .Thi s study isa n investigation into theprevalenc e ofdietar ybarrier samon g recentlydiagnose d diabetic patients,an d thechang e inprevalenc e after a follow-upperio d of oneyear . Furthermorew ewil l assessth eprevalenc eo f specificway so fcopin gwit h specificdietar ybarriers .

METHODS

Designo f the study Thedesig no fth e study isa cohort study.Diabeti c patientswer e first interviewed shortly after thediagnosi so f theirdiabete s (1987)followe d one year later (1988)b ya second interview.

Population The studywa scarrie d outamon g insulin-dependent diabetic patients.Th e diagnosiso fdiabete swa s limited toa maximu m of 6month sprio r toth e study. For reasonso fhomogeneit yo f thepopulatio n theag e rangewa s restricted from -37-

20 to4 0years .Respondent swer e recruited from thene wpatien tmember so f the DutchDiabete sAssociatio n (DDA).Thi sassociatio nha s 38,000patien tmembers , ofwho m 80-90% are insulin-treated.Member s of theDD Aar e knownt ob e better informed about theirdiabetes ,t ob ebette r educated,wit h femalepatient s outnumbering malepatient s (17).Fro m theDD Adatabas ew e selected those memberswh oha d enlistedwithi na perio d of 4month sprio r toth e studyan d whower e agedbetwee n 20-40year s (N=198).W e excluded elevenpeopl ewh o lived in regionsmor e thanfou rhour so ftravellin g away from theauthors ' residence.Throug h themailin gdepartmen t of theDD Aw e sent 187letter swit h the request toparticipat e inth e study.Thi s letterwa s followedb ya reminder.Altogethe r 174person s responded (93%). Of these,tw odi d nothav e diabetes,1 6di dno tus e insulinan d 64ha d theirdiabete sdiagnose dmor e than sixmonth sprio r toth e study.Thu s9 2wer e foundeligibl e for the study.O f these,si xwer eno t interested toparticipat e inth estudy ,tw ocoul d not be contacted by telephone orafte r repeatedmailings ,leavin g 84 respondents to startou r studywith .O f these fourwer e found tob epregnant ,thei r pregnancy concurringwit hth ediagnosi so fdiabetes .The ywer e excluded from the study. Inth e firstyea r completedata-set swer eobtaine d of8 0 respondents. Inth e follow-upyea r respondentswer e contacted again.Fou rwer e notwillin g toparticipat e inth estud yanymore ,sayin g itwa s too time consuming,thre eperson s could notb e contacted and onewa shospitalize d at that time.Eventuall ydata-set s forbot hyear swer e obtained of7 2 respondents.

Variablesan d questionnaire Inbot hyear s respondents first received aself-administere d questionnaire followedwithi n twoweek sb ya n interviewa tth ehom eo rplac e ofwor k of the respondent.Durin g this interview the response on the self-administered questionnairewa sexamined ,an d ifnecessary ,clarification swer e asked for.

In this studyw e haveuse d three setso fvariables . The first seto fvariables ,subject' scharacteristics ,consist so f general characteristics, regimencharacteristics ,perceive d mostdifficul t aspecto f thediabeti c treatment andperceive d health.Thes evariable swer eassesse d in the self-administered questionnaire.Respondent s filled indat eo fbirth ,dat e ofdiagnosi so fdiabetes ,heigh tan dweight .Educationa l level,gender , smoking behavior,regime n characteristics andperceive d health statuswer e assessed usingprecede d response categories.Height ,weight , regimen -38-

characteristics andperceive d healthwer eassesse d inbot hyears . The second set,dietar ybarriers ,consist so f2 4variable sbase d ona qualitative inventory (10).Th evariable s cover the followingcategories : 'Physical discomfort', 'Restricted fooduse' , 'Regularityo feating' , 'Reactions fromothers' , 'Eating insocia l situations', 'Having toeat 'an d 'Lacko fvariety' . Inbot hyear sdietar ybarrier swer e assessed inth e self-administered questionnaire.Respondent s indicatedwhethe r theyha d experienced anybarrier s inth emont hprecedin g the interviewan d subsequently theywer e asked to rate the severityo f thebarrie r ona three-point scale (notbothersome ,bothersom eo rver ybothersome) .Respondent swer e alsoaske d to indicate the frequencyo foccurrenc e of thesebarriers .Glasgo we t al. (9) found ahig h correlationbetwee n 'frequency'an d 'severity'o fbarriers .Als o inth epresen t studya hig h inter-correlation between 'frequency'an d 'severity'wa s found forbot hyears .(Fo r85 %o fth ebarrier sKendall' sta u B >0.75an d for60 %Kendall' s tauB >0.85). The severity-ratingswer euse d for furtheranalysis . The third seto fvariable s consistso fway so f copingwit h specificbarriers . Sixbarrier swer e selected: 'Feelinghungr ywhil eno tallowe d toeat' , 'Being allowed only smallamount so fcertai n foods', 'Wantinga foodexclude d by the diet', 'Having toea t regularly', 'Having totur ndow n foodoffers 'an d 'Having toea twhil e othersd onot' .I nth e198 7stud y respondentswer e asked todescrib e inthei row nword sho wthe yha d copedwit h these sixbarriers . Their responsewa suse d toprepar ea listwit ha full rangeo f specificway s ofcopin g foreac hbarrier .Eac h list contained awa yo f copingonl ydirecte d at compliance toth edie t (CO)a swel l asa wa yo f coping implying straightforward non-compliance (NC).I naddition , intermediateway s of coping were included ifpossibl e (IC). Inth e198 8study , respondents could indicate theus e of theseway so fcopin go na fourpoin t scale (never,sometimes , almostalways , always).

Data analysis Datawer e analyzedusin g SPSS/PC+ (18).Barrier s thatwer e rated as 'bothersome'o r 'verybothersome 'wer e recededa sa 'perceived barrier'.Fo r each respondent a totalbarrier-scor ewa s calculated by counting all perceived barriers.Dietar ybarrier swer e classified intoth eseve nbarrier-categories : 'Physicaldiscomfort' , 'Restricted fooduse' , 'Regularity ofeating' , 'Reactions fromothers' , 'Eating insocia l situations', 'Having toeat 'an d 'Lacko fvariety' . Foreac hcategor y theaverag eprevalenc e ofperceive d -39-

barrierswa s calculated (category-prevalence).Fo r allvariable sa frequency distributionwa smad e and, ifapplicable ,mean s and standard deviationwer e assessed.T o testdifference sw euse d non-parametric testsbecaus e normality couldno tb e assumed foral lvariable san dappropriat e non-parametric alternativeswer eavailable .McNemar' stes twa suse d to testdifference s in prevalence ofperceive d barriersbetwee nbot hyears .Wilcoxon' s signed-ranks test,includin g zerosan d correcting fortie s (19),wa suse d totes t change in totalbarrier-scor e and category-prevalence betweenbot hyears ,an d to test fordifference s incategory-prevalenc e between thevariou s categories for both years.T oanalyz e theprevalenc e ofway so fcopin g forth edifferen t dietary barriers thedifference s inscore so nway so fcopin gprimaril y directed at compliancewer e compared forth edifferen tbarriers .T o test for differences we appliedWilcoxon' s signed-ranks test,includin g zerosan d correcting for ties (19).Fo ral l teststwo-taile d probabilitieswer e calculated.

RESULTS

Subjects'characteristic s General characteristics aredisplaye d inTabl e 1.O f the 72 respondents 27 were female.Th e educational levelwa s somewhathighe r than thato f the average Dutch population of thatag e (20).Thei r agewa s 29.3year s± 5.6 (mean+ sd). Theduratio n ofdiabete sa tth e starto f the studywa s 4.1 months + 2.1 (mean+ SD). Respondentswer egenerall y notoverweight .BM I for 1987wa s 22.3kg/m 2+ 2.4 (mean+ SD). For 1988BM Iwa s 22.6+ 2.2 kg/m2 (mean+ SD) . Regimen characteristics,perceive d mostdifficul t aspecto f thedie t and perceived health aredisplaye d inTabl e 2.Mos t of the respondents,abou t80% , reported havingbee nadvise d toea ta t settime sconsumin g setamount s of . In1987 ,18 %an d in1988 ,8 %o f the respondents reported to have been advised adie twithou t added sugar.I n198 7 17%,an d in198 8 14%o f the respondentshav ebee nadvise d acarbohydrat e limiteddiet .Abou t 85%o f the respondents considered anequa ldistributio n of carbohydrates over theda y themos t important aspecto f theirdiet .I n1987 ,10 %an d in198 8 22%reporte d injecting insulinmor e than twicea day . Inbot hyear smor e thanhal f of all respondents regarded thedie ta sth emos tdifficul t aspecto f the diabetes regimen.Abou t 80%o f the respondents reported that they felthealthy . -40-

TABLE1 .Genera lcharacteristic so f7 2recentl ydiagnose dinsulin-treate d diabeticpatients .

Gender (female/male;number ) 27/45

Levelo feducational :(numbe ro frespondents ) Firstleve l 3 Secondlevel ,firs tstag e 23 Secondlevel ,secon dstag e 28 Thirdleve l 18

Age (meany r+ sd ) 29.3+ 5. 6

Durationo fdiabete s (meanmont h+ sd ) 4.1+ 1. 2

BMI198 7(mea nkg/m 2+ sd ) 22.3+2.4 BMI198 8(mea nkg/m 2+ sd ) 22.6+ 2. 2 êT) firstleve leducatio n= primar yeducation ;secon dlevel ,firs tstag e= generaleducation ,grade s1-3 ;secon dlevel ,secon dstag e= genera l education,grade s4- 6an dsenio rvocationa ltraining ;thir dleve l= vocationalcolleges ,universit yeducatio n

Dietarybarrier s Table3 show sth eprevalenc eo fth eperceive dbarrier swit hth ediabeti cdie t rangingfro m3 %t o61 %. Th efollowin gfou rbarrier sha da prevalenc eo fove r 40%, forbot hyears :'Feelin gil lbecaus eo firregula reating ' (1.1), 'Feeling hungrywhil eno tallowe dt oeat '(1.2) , 'Beingallowe donl ysmal lamount so f certainfoods '(2.1 )an d 'Wantin ga foo dexclude db yth ediet ' (2.2). Asignifican tdifferenc ei nprevalenc ebetwee nbot hyear swa sfoun dfo ronl y onebarrier :'Feelin gil lbecaus eo firregula reating '(1.1 )(p<0.05) . In198 7respondent sreporte da naverag eo f6. 3dietar ybarrier sou to f2 4 possiblebarriers ,whil ea yea rlate rthi saverag ewa s5.8 .Thi sdifferenc e wasno tstatisticall ysignificant .Averag eprevalenc eo fbarrier sfo reac h category (category-prevalence)i sdisplaye di nFigur e1 . Significanceo fdifference si ncategory-prevalenc ewa stested .I nbot hyear s severalcluster so fbarrier-categorie scoul db eidentifie ddifferin g significantlyi nprevalenc e (p<0.001).Fo r198 7w eidentifie dth efollowin g3 clusters,i norde ro fdescendin gprevalence .A : 'Physicaldiscomfort' , 'Restrictedfoo duse 'an d 'Regularityo feating' .B :'Reaction sfro mothers' , 'Eatingi nsocia lsituations 'an d 'Havingt oeat' .C :'Havin gt oeat 'an d 'Lacko fvariety' .Fo r198 8w efoun dth efollowin g4 clusters ,i norde ro f descendingprevalence .A : 'Physicaldiscomfort' ,'Restricte dfoo duse 'an d 'Regularityo feating' .B :'Regularit yo feating' ,'Reaction sfro mothers 'an d 'Eatingi nsocia lsituations' .C :'Reaction sfro mothers' ,'Eatin gi nsocia l situations'.D : 'Havingt oeat 'an d 'Lacko fvariety' . -41-

Physical discomfort ^^2^m%^^^*mSäA Restricted food use »«««»•««••A Regularity of eating Si^^M^^M^*^A, R Reactions from others W//////////////////A R,r Eating in social situations W////////////////Ar Having to eat W///////An Lack of variety

20 30 40 50 0 10 20 30 40 50 category prevalence (%) category prevalence(% )

Figure1 .Average prevalence (%)o fcategorise d dietarybarriers ,amon g insulin-treateddiabetics ,afte r4 month so fdiabete s (leftpanel ,1987 ) and 16month so fdiabete s (rightpanel , 1988).

Prevalenceo fcategorie swit hdifferen t lettersdiffere d significantly (p<0.001).Prevalenc eo fcategorie swit hth esam eletter sdi dno tdiffe r significantly.Categorie swit htw oletter sdi dno tdiffe ri nprevalenc e from categorieswit heithe ro fthes etw oletters .

Wayso fcopin g Table4 present sth eprevalenc eo fdifferen tway st ocop ewit hsi xdietar y barriersi n1988 .Th emos t frequentlymentione dwa yo fcopin gwa sdirecte da t compliance (CO).Exceptio nwa sth ebarrie ro ffeelin ghungr ywhil eno tallowe d toeat .Fo rthi sbarrie rth e most frequentlymentione dwa yo fcopin gi st oea t a carbohydrate free food.Fo reac hbarrie rth elowes tprevalenc ewa sfoun dfo r thoseway so fcopin g implying straightforward non-compliance (NC). The intermediateway so fcopin g (IC)wer e foundt ohav ea nintermediat e prevalence level.Whe n comparingth eprevalenc eo fway so fcopin gdirecte da tcomplianc e betweenth edifferen t barriersi twa sfoun d thatth ebarrie r 'feeling hungry whileno tallowe dt oeat 'ha dth elowes tprevalenc eo fcopin gdirecte da t compliance (p<0.01). The barrierso featin gi nsocia l situationsan dth ebarrie ro fregularit yo f eatinghav eth ehighes tprevalenc eo fcopin gdirecte da tcomplianc e (p<0.01). Thebarrier so frestricte d food-usehav ea nintermediat e prevalence-levelo f copingdirecte da tcompliance .N odifference swer e foundi nprevalenc eo fway s of copingamon g respondentswh oreporte da specifi c barriert ob ebothersom e orver ybothersom eo rrespondent sno treportin g thisbarrie rt ob ebothersome . -42-

TRBLE2 .Regime ncharacteristics ,perceive dmos tdifficul t aspecto f the diabetic treatement andperceive dhealt h (% of subjects)o f7 2 insulin-treated diabeticpatient s 4month san d 16month safte rdiagnosi so fdiabetes .

regimen characteristics 4 months 16month s of respondents

Dietaryadvice : Dietwit h settimin g+ amount so f carbohydrates 83 78 Dietwit hn oadde d sugar 18 8 Carbohydrate limited 17 14 Energy restricted 6 0 Nodie t 0 4 Other 3 6 Another addeddie t 7 6

Perceivedmos t important aspecto fdie t Equaldistributio n of carbohydrates 85 88 Equaldistributio n of calories 8 1 No sugar 6 3 Low fat 1 1 High fiber 0 1 Other 0 3 No answer 0 3

Frequencyo f insulin injections oncea da y 30 24 twicea da y 61 54 moreofte ntha ntwic ea da y 10 22

Perceivedmos tdifficul t aspecto f treatment Diet 60 70 Insulin injections 21 14 Measuringblood-sugar so r sugar inurin e 10 11 Noanswe r 10 6

Perceivedhealt h status Healthy 76 82 Sometimeshealthy,sometime sunhealth y 18 14 Unhealthy 6 4 -43-

TRBLE3 .Prevalenc eo fperceive dbarrier swit hth ediabeti cdie tamon g7 2 insulin-treateddiabeti cpatient s4 month san d1 6month safte rth ediagnosi s ofdiabetes . barriers barrierprevalenc e 4month s 16month s

%o frespondent s

Category1 :physica ldiscomfor t 1.1.Feelin gil lbecaus eo firregula reatin g 61 47 1.2.Feelin ghungr ywhil eno tallowe dt oea t 47 43 1.3.Havin gt oea twhil eno tfeelin ghungr y 36 40 1.4.Feelin gthirst ywhil eno tallowe dt odrin k 4 3

Category2 :restricte dfoo dus e 2.1.Bein gallowe donl ysmal lamount so fcertai nfood s5 9 59 54 2.2.Wantin ga foo dexclude db yth edie t 56 54 2.3.No tkno who wmuc ht oea to fcertai nfood s 38 29 2.4.I ti sdifficul tt osta yawa yfro msweet s 28 28 2.5.Eatin gmor etha nallowe d 26 35

Category3 :regularit yo featin g 3.1.Havin gt oea tregularl y 42 32 3.2.Disruption so fdail yroutin emake si t difficultt ofollo wth edie t 26 24

Category4 :reaction sfro mother s 4.1.Other sinterfer ewit hwha tI ea t 29 29 4.2.Other sforge tt obu yappropriat efood s 21 11 4.3.Other sbu yspecia lfood sfo rm e 18 19 4.4.Other sdisregar dtimin g 17 15 4.5.Other sd ono tconside rtha tI a mo na die t 7 10

Category5 :eatin gi nsocia lsituation s 5.1.Havin gt otur ndow nfoo doffer s 21 17 5.2.Havin gt oea twhil eother sdon' t 21 14 5.3.Bein ga bothe rfo rother s 18 21 5.4.Can' tea twit hothe rpeopl e 11 17 5.5.Bein ga nexceptio n 11 10

Category6 :havin gt oea t 6.1.Havin gt oea tlea no rdietar yfood s 17 11 6.2.Havin gt oea tmuc ho fa certai nfoo d 11 7

Category7 :lac ko fvariet y 7.1.Eatin gi sborin g 11 -44-

TABLE4 .Prevalenc eo fway so fcopin gwit hsi xdietar ybarrier samon g7 2 insulin-treateddiabetic s1 6month safte rth ediagnosi so fdiabetes .

Barriers Wayso fcopin g Prevalenceo fway so fcopin g (%)

Category1 .physica ldiscomfor t 1.2.Feelin ghungr ywhil eno tallowe dt oea t (IC) Itak esomethin gwithou tcarbohydrate s 41 (CO) Id ono tea t 29 (IC) Ismok ea cigarett e 17 c) (NC) Iea tsomethin gwit hcarbohydrate s 13

Category2 .restricte dfoo dus e 2.1.Bein gallowe donl ysmal lamount so fcertai nfood s (CO) I dono tea tmor etha nallowe d 67 (IC) I eatsomethin gelse ,whic hI a mallowe dt oea t 36 (IC) I takea smuc ha sI want ,an dea tles sothe rfood s 18 (IC) I dono tea tthes eproduct sanymor e 17 (IC) I injectextr ainsulin ,an dea twha tI wan t 13 (NO I eata smuc ha sI lik e 6 2.2.No tbein gabl et oea tpreferre dfood s (CO) Iea tsomethin gelse ,whic hI a mallowe dt oea t 56 (IC) Iea ta littl eo fwha tI wan tt oea t 15 (NC) Iea twha tI wan t 11

Category3 .regularit yo featin g 3.1.Havin gt oea tregularl y (CO) Iea tregularl y 90 (NC) Id ono tea tregularl y 7

Category5 .eatin gi nsocia lsituation s 5.1.Havin gt otur ndow npeoples 'foo doffer s (CO) Itur ndow npeople' sfoo doffer s 79 (IC) Iexplai nI a mdiabetic ,s otha tthe yunderstan d thatI hav et orefus eth efoo doffere d 44 (IC) Iinjec textr ainsulin ,s otha tI ca naccep tth efoo d 6 (NC) Iaccep tth efoo doffere d 1 5.2.Havin gt oea twhil eother sd ono t (CO) Ijus tea t 99 (IC) Ias kother st ob econsiderat eo fm yschedul e 14 (NC) Ipostpon eeatin g 34 a)Fo rreason so ftabulation ,coping-score swer edichotomized .A wa yo fcopin g wasconsidere dprevalen twhe nscore d'always 'o r'usually' . b)Thre etype so fway so fcopin gar edistinguished :CO :Onl ydirecte da t compliance;IC :Intermediat eway so fcoping ;NC :Way so fcopin gimplyin g non-compliance. c)Th eprevalenc eo fthi swa yo fcopin gamon grespondent swh osmok ei s30% . -45-

DISCUSSIONAN D CONCLUSIONS

In this study theprevalenc e ofdietar ybarrier swa sassesse d among insulin-treated diabetic patients,a naverag eo f 4month safte r thediagnosi s ofdiabete san d oneyea r later.Thi s studyconfirm s the findingso fothe r studiesthat ,fro ma diabetic' sperspective ,th edie t isth emos t problematic aspecto f thetreatmen to fdiabete s (4,6-9). For the insulin-treated diabetics participating inthi s studyth emos tprevalen tdietar y barrier-categories turnedou tt obe :feeling so fphysica l discomfort,th e restriction infoo d selectionan d thenee d fora regulareating-pattern .Barrier s caused by others,barrier s related toeatin g insocia l situations,barrier s related to having toea tcertai n foodso ramount so f foodo r findingeatin gboring ,al l have a lowerprevalence .N o relevant change inprevalenc e ofbarrier swa s foundbetwee n 4month san d 16months .Thi s implies that thebarrier s thatar e causedb y thediabeti cdie tar eno t solvedb y thediabeti c patientsafte r one year ofhavin gdiabetes . Theprevalenc e ofway s of copingdirecte d atcomplianc ediffere d for the different barriers.Th ebarrie r 'feelinghungr ywhil eno tallowe d toeat 'wa s leastofte n copedwit hb y compliance.Th ebarrier s related toeatin g insocia l situations,an d thebarrie r of regularityo featin gwer emos t often copedwit h by compliance.Fo r thebarrier so f restricted foodus e thiswa yo f copingha s an intermediate prevalence.Dietar ybarrier swit ha hig hprevalenc e are least often copedwit hb ycompliance .

Physical discomfort Thehig hprevalence, u p to61% ,o f thebarrier s inth ecategorie sphysica l discomfort and regularity ofeatin gdemonstrate sho wdifficul t iti sfo r diabetic patients tocoordinat e irregularitieso fdail y lifewit h the required stability of fooduse .Diabetic s feelhungr ywhil eno tallowe d toeat .The y find ithar d toea t regularly.The yd ono talway smanag e toea t regularlywit h the result that they feel ill.O r theyhav e toea ta t timeswhe n theyd ono t feel hungry.Th emos tofte nmentione dwa y tocop ewit h thebarrie r 'feeling hungrywhil eno tallowe d toeat 'i st oea ta carbohydrat e free food. Ina previousqualitativ e study itwa s found that theseproduct sma yb e lowi n calories,suc ha scucumbe r or fibre rich food,bu t thediabeti c patientma y alsodecid e totak e fatty foods,suc ha schees e or sausage.On e thirdo f the smoking respondents,indicat e thatthe ysmok et ocop ewit h feeling hungrywhil eno tallowe d toeat .Lea ne tal . (12)sugges t thatman ydiabeti c -46-

dietsar e toolo w inenerg y content and thata diabeti cpatien twh o feels hungrywil lus ea fatty foodwhe neatin gextr a carbohydrates isno t acceptable.Fo r thepopulatio n inthi s study,wit ha mea nBM Io fabou t22.5 , anenerg y restricted diet isno t relevant.Howeve r iti sno tonl ya diet systematically low inenerg y thatma y cause feelingso fhunger ,ultimatel y leading toa highe r fat-intake.Severa l studies showed a remarkable day toda y variation inenergy-intak e amongdiabeti c patients (21-23).Mos to fou r respondents received adietar yadvic ewit h set times toea t setamount so f carbohydrates.Accordin g tothes e respondents themos t importantaspec to f the diet isth eequa ldistributio n ofcarbohydrate s over theday .Suc hdiet sar e inadequate tocove r theexistin gda y toda yvariation s inenergy-intake .A dietwit h set times toea t setamount s of carbohydrates isunrealistic ,i n viewo f the fact that theenerg y intakeo fa diabeti c patientvarie sa great deal fromda y today .Suc ha die tgive s rise tohighl yprevalen t dietary barriers thatar e copedwit h inpotentiall yunhealth yways .Diet swit h set timest oea t setamount so fcarbohydrate s shouldno tb e prescribed. Iti sessentia l toteac hdiabetic sadequat eway sho w tovar y their daily energy-intake inorde r tocop e effectivelywit h the irregularities ofdail y life. Studieshav e compared the impacto fa measure d versus anunmeasure d diet fordiabeti c patients (24-27). These studies shown odetrimenta l effectso n diabetic control for thegrou po fdiabetic so n theunmeasure d diet.Base d on our study theassumptio n canb emad e thatwit h suchdiet s theprevalenc e of dietarybarrier swil ldecrease .

Food preferences Alsohig h inprevalence ,u p to58% ,ar e thosebarrier swher ediabetic s feel restricted inthei r food selection.Diabetic s report that theyca nno tea t the foods they like,tha t theyd ono tkno who wmuc h theyar eallowe d toea to fa food,o r find itproblemati c tob e restricted toonl y smallamount s of certain foods.Th e restrictionsexperience d apply to two food-groups:food s containing fatan d foodscontainin g sugar (10).Th eaverag e level of fatintak e inth e Netherlands is40 %o f thetota l energy intake,wit hmor e thanone-thir d being (29).T oattai n the recommended intake ofonl y 30%o f total energy,wit h amaximu m ofone-thir d saturated fat,dietar y education could be directed atpresentin gwell-tastin g alternativeswit hmodes t amounts of saturated fats. A complete restrictiono nadde d sugar fordiabeti cpatient s isno tnecessary , althoughman ydiabetic s report tohav ebee nadvise d sucha diet .Th e accepted -47-

maximumo f 50gram so fadde d sucrose isstil lwel lbelo w the level of sucrose intakeo f thegenera l Dutchpopulatio n (28). A dietwit ha complet e sugar restrictionunnecessaril y limitsdiabetic s inth eenjoymen t of food. Iti s suggested thatallowin g sugar inth edie tmake s thedie tmor epalatabl e(13) . Thismigh t increase long-term compliancewit h importantaspect so f thediet , sucha sa lowfa t intake (2,29). Teachingdiabetic sho wt oinclud e commonly usedquantitie so f sucrose inthei rdiet ,wil l at leasthel pmakin g thedie t easier toliv ewith ,withou tendangerin g somatichealth .

Social barriers Thebarrier swher eothe rpeopl e playa n important role,hav e a lower prevalence thanth eafore-mentione d barriers.Th e relativelylo wprevalenc e of socialbarrier swa squit eunexpected .Ar ye t al. (4)stat e thatdiabetic s should learnassertiv e refusal skillst ocop ewit h foodoffers .The yexpec t such skills tob eessentia l inattainin gdietar yadherence .Result s fromou r studyd ono t support thisnotion .Socia lbarrier shav ea prevalenc e ofu p to 30%. Furthermore,socia lbarrier sar emos tofte n copedwit hb ycompliance . Barriers ofphysica l discomfort and restricted foodus e have ahighe r prevalence andar e lessofte n copedwit hb ycompliance .Effort s should primarilyb eaime d at teachingdiabetic sadequat e coping skills tomanag e the irregularitieso fdail y life,t oea t foodsthe ylike ,includin g sugar containing foods.I nthi swa y the frequencywit hwhic h food-offersnee d tob e turneddow nma yals odiminis h sinceman y foodsca nb e incorporated intoth e diabeticdie twithou t endangering somatichealth .

The answersw e received onou rquestion so nth eway so fcopin gma yhav e been influenced by the respondents'wis h togiv e sociallydesirabl e answers demonstrating compliantbehavior .Effort swer emad e tominimiz e thiseffec t by notassociatin g the research-projectwit h themedica l community and by absolutely refraining fromvalu e judgementswhil e interviewing.Still ,th e absolutevalue so f frequency ofus e ofway so fcopin g should be interpreted with caution.Therefor ew ebase d ourmajo r conclusions on the relative comparisono f the frequencieso fway so f coping,an dno to n theabsolut e values. -48-

Barriers:har d to overcome The absence of change inprevalenc e ofdietar y barriers between four months and 16month safte r thediagnosi s suggests thatdietar y barriers are not easily overcome bydiabeti c patients.Furthermore ,n odifferenc e was found in prevalence ofway s of coping among respondents experiencing a certain barrier asbothersom e ornot .Difference swoul d have been found, ifeffectiv eway s of coping toovercom e thesedietar y barriers had existed. This finding confirms the suggestion that thosedietar y barriers thatw e assessed areno t easily solved. Dietary barriers occurwhe n the rules of thedie t are incompatible with the irregularities ofdail y life, food preferences ordislikes , food offers and social situations.I t isessentia l toprovid e diabetic patients with diets that fit inwit h the irregularities of their daily lives, their foodpreference s ordislikes ,offere d foodsan d social situations.

ACKNOWLEDGEMENTS

This studywa s supported by grants from theMinistr y ofWelfare ,Healt h and Cultural Affairs,Th eHague ,an d theAgricultura l UniversityWageningen , The Netherlands.W e thank theDutc h DiabetesAssociatio n for their help in recruitment of respondents,Ms .M . Eimers forassistanc ewit h data-analysis. We appreciated thehelpfu l comments ona nearlie r version of thispape r bydr . F.va nde r Horst anddr .C .d eGraaf .

LITERATURE CITED

1.Diabete s and nutition study groupo f the European association for the study ofdiabetes-1988 :Nutritiona l recommendations for individuals with diabetes mellitus.Diab .Nutr .Metab .1:145-149 , 1988. 2.Man n JI.: Simple sugars and diabetes.Diabeti c Medicine 4:135-139,1987. 3.Terpstr a J.: Sucrose toegestaan bijdiabete smellitus ? Ned.Tijdschr . Geneeskd. 49:2255,1983. 4.Ar y DV,Toober t D,Wilso nW , GlasgowRE. :Patien t perspective on factors contributing tononadherenc e todiabete s regimen.Diab .Car e 9:168-172, 1986. 5.Glan z K.: Compliance withdietar y regimens: itsmagnitude ,measuremen t and determinants. Prev.Med . 9:787-804,1980. 6. Lockwood D, FreyML ,Gladis h NA,His sRG. :Th ebigges t problem in diabetes.Diabete s Educator 12:30-33,1986. 7. Jenny JL.:Difference s inadaptatio n todiabete s between insulin-dependent and non-insulin-dependent patients: implications forpatien t education. Patient Education andCounselin g 8:39-50,1986 -49-

8.Jenn yJL. :A comparison of fourag egroups 'adaptatio n todiabetes .Can . J. Publ.Healt h75:237-244,1984 . 9.Glasgo wRE ,McCau lKD ,Schafe rLC.:Barrier s to regimenadherenc e among personswit h insulin-dependent diabetes.J . Behav.Med . 9:65-77,1986. 10.Niewin dAC : Diabetesan dDiet :Foo dchoices .Thesi sWageninge n Agricultural University.Th eNetherlands ,1989 . 11. HouseWC ,Pendleto nL ,Parke r L.:Patients 'versu sphysicians ' attributions of reasons fordiabeti cpatients 'non-complianc ewit hdiet . Diab.Car e 4:434,1986 12. LeanMEJ ,Jame sWPT. :Prescriptio n ofdiabeti cdiet s inth e 1980s.Lance t 723-725,1986:1. 13.Nutta l FQ.:Die tan d thediabeti c patient.Diab .Car e 6:197-207,1983. 14. Broussard BA,Bas sMA ,Jackso nMY. :Reason s fordiabeti cdie tno n compliance amongCheroke e Indians.J .Nutr .Educ .14:56-57,1982 . 15.Wes t KM.:Die t therapyo fdiabetes :a nanalysi so f failure.Ann . Int.Med . 79:425-434,1973. 16.McCau l KD,Glasgo wRE ,Schafe rLC : Diabetes regimenbehaviors :predictin g adherence.Med .Car e25:868-881,1987 . 17.Visse rAPH ,Boogaar d PRFva nde ,Vee nE Ava nder. :Participati e van diabeten.Medisc h Contact48:1502-1504,1985 . 18.Norusi sMJ. :SPSS/PC +SPS S inc.Chicago ,1986 . 19.Marascuil o LA,McSweene yM. :Nonparametri c anddistribution-fre e methods for the social sciences.Monterey :Brook/Col e publishing companyinc. , 1977. 20. Netherlands Central Bureauo fStatistics. :Statistica l yearbook of the Netherlands 1987.Th eHague ,Staatsuitgeverij/CBS-publications ,1988 . 21. ChristensenNK ,Terr yRD ,Wyat t S,Picher tJW ,Loren zRA. : Quantitative assessment ofdietar yadherenc e inpatient swit h insulin-dependent diabetesmellitus .Diab .Car e 6:245-250,1983. 22. Henry CL,Heato nKW ,Manhir eA ,Harto gM. :Die tan d thediabetic :th e fallacy ofa controlle d carbohydrate intake.J . Hum.Nutr .35:102-105 , 1981. 23. Tunbridge R,Wetheril l JH.:Reliabilit y and costo fdiabeti cdiets . BritishMed .J .78-80,1970 . 24. Chantelau EA,Frenze nA ,Gösinge rG ,Hanse n I,Berge rM. : Intensive insulin therapy justifies simplificationo f thediabetic-diet ,a prospective study in insulin-dependentdiabeti cpatients .Am .J . Clin. Nutr.45:985-962,1987 . 25.Gallaghe rAM ,Abrair a C,Henderso nWG. :A four-year prospective trial of unmeasured diet inlea ndiabeti c adults.Diab .Car e 7:557-565,1984. 26. Chantelau E,Sonnenber gGE ,Stantitzek-Schmid t I,Bes t F,Altenäh r H, BergerM. : Diet liberalization andmetaboli c control intyp e Idiabeti c outpatients treated bycontinuou s subcutaneous insulin infusion.Diab . Care 6:612-616,1982. 27.Abrair a C,Bartol oM de ,Myscofsk y JW.:Compariso no funmeasure d versus exchange diabetic diets inlea nadults .Am . J. Clin.Nutr .33:1064-1070 , 1980. 28. Ministry ofWelfare ,Healt han dCultura lAffairs. :Wa t eetNederland . Rijswijk,Th eNetherlands ,1988 . 29. SlamaG , Jean-Joseph P,Goicole a I,Elgrabl y F,Haard tMJ ,Costagliol a D, Bornet F,Tchobroutsk yG. : Sucrose takendurin gmixe dmea l hasn o additional hyperglycemic actionove r isocaloric amountso f starch in well-controlled diabetics.Lance t122-125,1984:2 . -50-

CHAPTER 6

DIABETICS' DIETARY BARRIERS: PREVALENCE AND COPING STRATEGIES

R.D. Friele, A.C. Niewind, J.G.A.J. Hautvast, J.M.P. Edema

ABSTRACT

Inthi sstud yw einvestigate d dietarybarrier samon g57 1insulin-treate dan d 218no ninsulin-treate d diabeticpatients .W eals o studiedth eprevalenc eo f waysdiabeti cpatient s copewit hdifferen tdietar ybarriers .Dietar y barriers were categorizedusin g factor-analysis.Th emos tprevalen tdietar y barriers wereth efinancia l costso fth edie tan dfeeling so fphysica ldiscomfor ta sa resulto fth eincompatibilit y betweenth erequire d regularityo featin gan d the irregularitieso fdail y life.Somewha t lessprevalen twer e barrierswhic h arisebecaus eo fa restricte d fooduse .Amon gth eleas tprevalen twer e barriers relatedt oeatin gi nsocia l situations.Dietar ybarrier swit ha hig h prevalencewer e leastofte ncope dwit hb ycompliance .Th emajo r resultso f this studyappl yt obot h insulin-treatedan dno ninsulin-treate d diabetic patients.Dietar yeducatio ndirecte da tth epreventio no fdietar y barriers will improveth equalit yo flif eo fdiabeti cpatient san dwil l resulti ndiet s thatar eeasie r tob eadhere dto .

INTRODUCTION

Diabeticpatient sar eadvise da specia ldie ti norde rt ocontro lth e consequenceso fthei rdiabetes .T odecreas eth eincrease d risko n cardiovascular diseasesth efa tconten to fth ediabeti cdie t shouldb eon e thirdo ftota lenergy-intak e (Diabetesan dNutritio n StudyGrou po fth e EuropeanAssociatio n forth eStud yo fDiabetes-1988 ,1988 ;Kisseba h& Schectman, 1988). Forman yyear sa tota lba no nsuga rha sbee na majo r aspect ofth ediabeti cdiet ,bu tnowaday sa nintak eo f5 0gram so fsucros epe rda yi s considered tob eacceptabl e (Mann,1987) . Insulin-treated diabetic patients needt obalanc e insulin injections,dietar y intakean dphysica l activity (Skyler, 1982).No ninsulin-treate d diabetics tendt ob eoverweigh tan d thereforear eadvise dt olos eweigh t (Hansen,1988 ;Wheeler ,Delanth y& Wylie-Rosett,1987 ;Woo d& Bierman ,1986 ;Skyle r 1982). -51-

Formos tdiabetic sth edie ti sth emos tproblemati cpar to fth eregime n (Lockwoode tal. ,1986 ;House ,Pendleto n& Parker ,1986 ;Glasgow ,McCau l& Schäfer,1986 ;Jenn y1986) .I na cross-sectiona lstud yamon g54 0 insulin-treateddiabetic si twa sfoun dtha t87 %o fth ediabetic sexperience d oneo rmor edietar ybarrier s (Niewind,1989) .A stud yamon grecentl ydiagnose d diabeticsassesse ddifference si nprevalenc eo fcategorie so fdietar y barriers.Barrier swer ecategorize daccordin gt ocommo nsens ejudgments .I t wasfoun dtha tth emos tprevalen tcategorie swer ethos ewher ediabetic s experiencephysica ldiscomfor to rwher ethe yfee lrestricte di nfood st ochos e from.Similarl yhig hi nprevalenc ewer ebarrier sdu et oth enecessit yt oea t regularly.Les sprevalen twer ecategorie srelate dt oeatin gi nsocia l situations(Chapte r5) . Dietarybarrier simpai rth equalit yo flif eo fdiabeti cpatient ssinc ethes e barriersimpl yphysica ldiscomfor tan dlimite dpossibilitie st oenjo yfoo do r tokee pu psocia lrelation s(Ary ,1986 ;Nuttal ,1983) .Therefor eth e preventiono fdietar ybarrier swil lcontribut et oth eimprovemen to fth e qualityo flif eo fa diabeti cpatient .Furthermore ,severa lauthor shav e suggestedtha tdietar ybarrier sca nlea dt odietar ynon-complianc e(McCaul , Glasgow& Schäfer ,1987 ;Glasgo we tal. ,1986 ;Ar ye tal. ,1986 ;Jenny ,1986 ; Schafere tal. ,1983 ;Broussard ,Bas s& Jackson ,1982) .However ,dietar y barriersar ecope dwit hi ndifferen tways .I na qualitativ estud yi twa sfoun d thatth ewa ydiabetic scop ewit hdietar ybarrier srang efro mcomplianc ewit h therestriction so fth edie tt odeviation sfro mth ediet .Diabeti cpatient s deviatefro mthei rdie tt ofee lphysicall ywell ,t ob eabl et okee pu psocia l relationso rthe ychoos et oea tpreferre dfood s(Chapte r4) .I twa sals ofoun d thathighl yprevalen tdietar ybarrier sar eleas tofte ncope dwit hb y compliance,wherea scomplianc ewit hdietar ybarrier swit ha lowe rprevalenc e provedt ob emor elikel y (Chapter5) .

Absenceo fdietar ybarrier simprove sth equalit yo flif eo fdiabeti cpatients . Preventinghighl yprevalen tdietar ybarrier sma ymak eth edie teasie rt o adhereto .Reliabl eidentificatio no fth eprevalenc eo fdietar ybarriers ,an d theirrelate dway so fcoping ,i sa firs tste pi nth eproces so fpreventin g suchbarriers .I nthi sstud yw eteste dwhethe rw ecoul dreproduc eth efindin g ofa relativel yhig hprevalenc eo fbarrier sexpressin gphysica ldiscomfort , restrictedfoo dus ean dregularit yo featin gi na study-populatio nvaryin gi n durationo fdiabete san dage .Als ow eteste dwhethe rw ecoul dreproduc eth e findingtha thighl yprevalen tbarrier sar eleas tlikel yt ob ecope dwit hb y -52-

dietary compliance. Furthermore,w e assessed theprevalenc e of dietary barriers and their relatedway s of coping among insulin-treated diabetic patients andno n insulin-treated diabeticpatients .

METHODS

Population The study population consisted of insulin-treated andno n insulin-treated diabetic patients,age d between 20-65years . Inth eNetherland s there isn o general database with alldiabeti c patients.Th eDutc hDiabete s Association (DDA)ha sth emos t completedata-bas e ofdiabetic spatients .No n insulin-treated diabetics areunder-represente d in thisdata-base . From the DDApatien tmembe r filew e selected thosewh oha d joined theDD A in the past fiveyears .Nin e hundred and four patientmember swer e randomly selected. They were sent aquestionnair e together with alette r explaining the study,an d a prestamped envelope to return thequestionnaire . To guarantee respondents' anonymity allmai lwa shandle d by themailin g department of theDDA . To increase response-rate we sent two reminders.Als o theDD Aannounce d in its newsletter the studyurgin g itsmember s toparticipate .Additiona l respondents were recruited viadietician s inthre e clinics and twohome-base d health care organizations.

Variables and questionnaire Three setso fvariable s areuse d inthi s study. The first seto fvariable s are respondents'characteristics .Respondent s gave their date ofbirth ,dat e ofdiagnosi s ofdiabetes ,heigh t andweight . Educational level,gender ,smokin g behavior, regimen characteristics and perceived healthwer e assessed usingprecode d response categories. Education was classified according to the International Standard Classification of Education byUNESCO ,adapte d toth eDutc h educational system (Netherlands Central Bureau of Statistics, 1988). The second set,dietar y barriers,contain s 22variables .Thes evariable s are based ona qualitativ e study among insulin-treated diabetics assessing possible dietary barriers (Niewind, 1989), a replication of this qualitative study among non insulin-treated diabetic patients and our experiences with an earlier version of this seto fvariable s (Chapter 3& 5).Fro m this last mentioned listw e excluded redundant items, reworded unclear items and added -53-

one itemo n the financial costo f thediet .Thi s itemha dno tbee n included in thepreviou s study,sinc eou rpurpos e intha t studywa s toasses sth e frequencywit hwhic hdietar ybarrier swer e experienced aswel l asth edegre e of severity.Assessmen t of the frequencyo fencounterin g extra financial costs of thedie tdi d notmak e sense.I na pretes t the response formatwa s tested. A three-point scale 'nobarrie r -a barrie r -a majo r barrier'prove d tob e inadequate since respondentsperceive d thedifferenc e between the first two scalepoint s tob e far larger thanth edifferenc ebetwee n the last two scale points.A scalewa smad ewit hmor e equallydistribute d differencesbetwee n the scale-pointsb yaddin gon e scalepoint ,resultin g ina four-point scale: 'No barrier -n obarrier ,bu t inconvenient- a barrie r -a majo rbarrier' . Assessing the frequencyo fbarrier swa somitted , since frequency-rating and severity-ratingwer e found tob ehighl y correlating (Glasgowe t al.,1986 ; Chapter5) .

The third seto fvariable s consistso fbarrier-relate dway so f coping. Ina previous studyw eassesse dpossibl ebarrier-relate dway so f copingwit h6 dietarybarrier s (Chapter 5).Fro mthese ,fou rbarrier swer e selected for this study.Thes ebarrier sare : 'Feelinghungr ywhil eno tallowe d toeat' , 'Restricted tosmal lamount so fa certain food', 'Having toea twhil e others donot 'an d 'Having toea t regularly'. Each listo fbarrier-relate dway so f coping contained awa yo fcopin gonl ydirecte d atdietar y compliance anda wa y of coping implying straightforward non-compliance.Wheneve r possible intermediateway so f copingwer e included.Respondent s could indicate theus e of theseway so f copingo na fourpoin t scale (never-sometime s-almos t always -always).

Dataanalysi s Analysis ofdat awa sdon eusin gSPSS/PC + (Norusis,1986) . Frequenciesand ,i f applicable,mean swer e calculated for the respondents'characteristics .Th e totalnumbe r ofperceive d barrierswa s calculated byaddin gu pal lperceive d barriers (scored as 'abarrier 'o r 'amajo r barrier'). Common sense judgments were used tocreat e barrier-categories inou r previous study. Inthi s study thepopulatio n size suffices tobas e thecategorizatio n ofbarrier so n the response.A principal componentsanalysi swa sperforme d on the responseo n the 22dietar ybarriers ,followe d bya varima x rotation.Th ebarrier swer e categorized inagreemen twit h thevarimax-rotate d components.Th e adequacyo f applying the samecategorie s tobot hpopulation swa s tested. Forbot h -54-

sub-populationstw o separatevarimax-rotate d six components solutions were assessed. The categorization of the 22barrier s for these sub-populationswa s compared to the categorization of these 22barrier s for the total population. Category-prevalence was calculated byaveragin g theprevalenc e of the perceived-barriers inon e category. Statistical testswer e performed using non-parametric statistics,sinc enormalit y ofal ldat a could notb e assumed and appropriate non-parametric testsar eavailable .Difference s between the scores on twodifferen tvariable swithi n apopulati nwer e tested using Wilcoxon'ssigned-rank s test,includin g zerodifference s and correcting for ties (Marascuilo& McSweeney , 1977). Differences inth e samevariable , between twopopulations ,wer e testedusin gMann-Whitney' s test,correctin g for ties. For all tests two-wayprobabilitie swer e assessed.

RESULTS

Respondents' characteristics Outo f 904questionnaire s thatwer e sent toDDA-members ,73 0 (81%)wer e returned. From respondents thatwer e recruited viadietician s 59 questionnaires were obtained. Total sample sizeo f the study population amounted to 789.O f the 789 respondents 571wer e insulin-treated (INS-population)an d 218wer e non insulin-treated (NlNS-population).O f the NINS-population74 %wer eusin g oral hypoglycemic agents.Respondents ' characteristics aredisplaye d inTabl e 1.O f the INS-population 51%an d 43%o f theNINS-populatio n weremale .Th e level ofeducatio n did notdiffe r between bothpopulations .Compare d to theNINS -populatio n the INS-population was younger, their duration ofdiabete swa s longer and their BMIwa s lower.O f the INS-population 41%smoke d with 27%o f theNINS-populatio n smoking. The majority of the INS-population (73%)reporte d havingbee n advised toea t set amounts of carbohydrates at set timeswhil e 39%reporte d tohavin g been advised not toea t sugar,19 %t o limit carbohydrate intake and 10 %t o restrict their energy intake.Th emajorit y of theNINS-populatio n (71%) reported having beenb eadvise d not toea t sugar, 36%t oea t set amounts of carbohydrates at set times, 34%t o restrict energy-intake and 14%t o restrict carbohydrate-intake. Nodifferenc e inperceive d health forbot h populations was found.Abou t half ofbot hpopulation s considered themselves healthy or very healthy. -55-

TABLE1 .Characteristic so fth ediëibeti cstud ypopulation :Insulin-treate d (INS,N=571) ,an dno ninsulin-treate d(NINS ,N=218) .

INS NINS Difference3' (INS-NINS)

GENDER( %maie ) 51 43

EDUCATION (%o fsubjects ) b)

Firstleve l 20 24 NS Secondlevel ,firs tstag e 36 44 Secondlevel ,secon dstag e 29 21 Thirdleve l 15 11

AGE (meany r+ sd ) 45.3+ 13. 5 53.3+ 9. 1

DURATIONO FDIABETE S (meany r+ sd ) 8.2+ 8. 6 4.6+ 4. 7

BMI (Wt/Ht2:Kg/m2;% o fsubjects )

Low- < 2 0 4 >20- < 2 5 59 36 >25- < 3 0 26 42 >30- Hig h 7 18

SMOKING( % smokers) 41 27 c) DIETARYadvic e( %o fsubjects )'

Dietwit hse ttimin g+ quantitie s 73 36 Dietwit hn oadde dsuga r 39 71 Carbohydratelimite d 19 14 Energyrestricte d 10 34 Otherdiabetic-die t 6 13 Nodie t 1 1

PERCEIVEDHEALT HSTATU S( % ofsubjects )

Feelver yhealth y 8 4 NS Feelhealth y 47 48 Feelsometime shealthy / 39 41 sometimesunhealth y Feelunhealth y 5 7 Feelver yunhealth y 2 1

a)NS ,N osignifican tdifferenc ebetwee nbot hpopulation swa sfoun d ***,p<0.001 ,Mann-Whitney' stest .(— : Nottested ) b)firs tleve leducatio n= primar yeducatio n secondlevel ,firs tstag e= genera leducation ,grade s1- 3 secondlevel ,secon dstag e= genera leducation ,grade s4- 6an dsenio r vocationaltrainin g thirdleve l= vocationa lcolleges ,universit yeducatio n c)Du et omultipl eresponse ,th etota ladd su pt oove r100% . -56-

Dietarybarrier s Table 2show sth eprevalenc e of theperceive ddietar ybarrier s ranging from5 % to 51%.Th emea nnumbe r ofbarrier s for the iNS-population is4. 9 and for the NINS-populations 5.2.,th edifferenc ewa sno t significant.Fo rbot h populations the fivebarrier swit h thehighes tprevalenc e are: 'Disruptiono f thedail y routinemake s itdifficul t tofollo wth ediet' , 'Feeling illbecaus e of irregular eating', 'Feelinghungr ywhil eno tallowe d toeat' , 'Feeling ill becauseo f eatingmor e thanallowed' , 'Spendingmuc hmone yo n fooddu e toth e diet'.

A solutionwit h sixprincipa l componentswa s selected fromth epossibl e solutionso f thevarima x rotatedprincipa l componentso nbarrier-scores .Thi s solutionyielde d thebes t interprétablese to fcomponents .Th e sixth component was the firstwit ha neigenvalu ebelo wone .Al lvariable s loadedpositivel y on these six components.Th ebarrie r 'spendingmuc hmone yo n food'ha da maximu m load of 0.3 to0. 4 on threedifferen t components.N o cleardecisio n couldb e madewher e tocategoriz e thisbarrier .Therefor e thisbarrie rwa s treated asa separate category.Thi s resulted ina tota lo f sevencategorie so fdietar y barriers: 'Physicaldiscomfor t and instabilityo featin gpattern' , 'Extra financial costs','Restricte d fooduse' , 'Inadequate foodoffers' , 'Eating in social situations', 'Required regularityo feating 'an d 'Restricted food pattern'. Forbot h sub-populationstw o separatevarimax-rotate d six components solutionswer e assessed. For the INS-populationw e found thatth e categorization ofth e 22barrier swa s identical toth ecategorizatio n of these 22barrier s forth e totalpopulation .Fo r theNINS-populatio nw e found the categorizationo f the 22barrier s todiffe r fromth ecategorizatio no f these 22barrier s for thetota lpopulation :fiv ebarrier swer e categorized ina n other category.T otes twhethe r thesedifference s shouldb eattribute d toa n essentialdifferenc e in responsebetwee nbot h sub-populations,w e randomly selected 55sample s fromth e INS-populationwit h21 8 respondents.Fo r these 55 samplesw e assessed 55varimax-rotate d six components solutions.W e compared thecategorizatio n ofbarrier sbase d onthes e sixcomponent s solutionswit h thecategorizatio nbase d on the sixcomponent s solution from the total population.Th emedia nnumbe r ofbarrier s thatwer e categorized ina differen t waywa s 5 (range:1-8) .Thes e results showtha ta numbe r of fivebarrier s categorized ina differen twa y ist ob eexpecte d ina randomlydraw n sample -57-

TABLE2 .Prevalenc eo fperceive ddietar ybarrier s(% )wit hth ediabeti cdiet , ofth ediabeti cstud ypopulation :Insulin-treate d (INS,N=571) ,an dNo n insulin-treated (NINS,N=218) .

Treatmentb )

INS NINS Effect (INS-NINS)

CATEGORY1 :PHYSICA LDISCOMFOR TAN DINSTABILIT YO FEATING-PATTERN . 1.1.Disruptio no fth edail yroutin emake si t 45 51 NS difficultt ofollo wth edie t 1.2.Feelin gil lbecaus eo firregula reatin g 44 44 NS 1.3.Feelin ghungr ywhil eno tallowe dt oea t 37 42 NS 1.4.Feelin gil lbecaus eo featin gmor etha n 30 30 NS allowed

CATEGORY2 :EXTR AFINANCIA LCOSTS . 2.1.Spendin gmuc hmone yo nfoo ddu et oth edie t 41 32

CATEGORY3 :RESTRICTE DFOO DUSE . 3.1.Bein gallowe donl ysmal lamount so f 26 30 NS certainfood s 3.2.I ti sdifficul tt osta yawa yfro msweet s 25 29 NS 3.3.Wantin ga foo dexclude db yth edie t 24 26 NS 3.4.Havin gt oea tlea nfood s 16 17 NS 3.5.Other sea tfood sI can' tea t 15 20 NS

CATEGORY4 :INADEQUAT EFOO DOFFERS . 4.1.Other sforge tt obu yappropriat efood s 21 25 NS 4.2.Hav et osa yn ot ofoo doffer s 18 22 NS

CATEGORY5 :EATIN GI NSOCIA LSITUATIONS . 5.1.Other sinterfer ewit hm yeatin g 24 22 NS 5.2.Hav et oea twhil eother sd ono t 18 20 NS 5.3.Havin gt oexplai nth edie tt oother s 12 18 NS

CATEGORY6 :REQUIRE DREGULARIT YO FEATING . 6.1.Havin gt oea twhil eno tfeelin ghungr y 25 15 ** 6.2.Havin gt oea tregularl y 17 14 ** 6.3.Havin gt otak efoo dalon g 16 11 ** 6.4.Havin gt oea tmuc ho fa certai nfoo d 7 5 *

CATEGORY7 :RESTRICTE DFOO DPATTERN . 7.1.No tkno who wmuc ht oea to fcertai nfood s 19 31 ** 7.2.No tabl et oenjo yfoo d 16 23 ** 7.3.Fin deatin gborin g 11 14 **

NUMBERO FPERCEIVE DBARRIER S(Mea n+ SD ) 4.9 5.2 NS (±4.3 ) (±4.7 ) a)Fo rreason so fclea rdispla yscore so nth edietar ybarrie rscal ewer e dichotomised.A barrie rwa sconsidere dprevalen twhe nscore da s' abarrier ' or 'agrea tbarrier' . b)Th eeffec to ftreatmen t (insulin-versusnon-insulin )wa steste dusin g Mann-Whitney'stest .Treatmen teffec twa steste dfo reac hbarrie rusin gth e original4-poin tscale . NS:n osignifican tdifference swa sfound ,* p<0.0 5* *p<0.01 . -58-

fromth eINS-population .Thi snumbe ri sequa lt oth efiv e differently categorized barriers fromth eNINS-population .Therefore ,w edecide dt oappl y the same categorizationo fbarrier st obot hsub-populations .

The category-prevalence forth eINS-populatio n isdisplaye d inFig.l .Th e category-prevalence ishighes tfo rth ecategorie s 'Physicaldiscomfor tan d instabilityo featin gpattern ' (38%)an d'Extr a financial costs' (41%). Less prevalent isth ecategor y 'Restricted fooduse ' (23%). Thiscategor yi s followedb yth ecluste ro fcategorie s 'Inadequate foodoffers ' (19%), 'Eating

Physical discomfort and instability of eating-pattern

Financial costs of the diet

Restricted food use

^adequate food offers

Eating in social situations

Required regularity of eating

Restricted food pattern

10 20 30 40 50 0 10 20 30 40 50 category prevalence(X ) category prevalence(X I FIGURE1 .Averag e prevalence (%)o fcategorize ddietar ybarrier samon g insulin-treateddiabeti cpatient s (leftpanel )an dnon-insuli ntreate d diabeticpatient s (right panel). Prevalenceo fcategorie swit hdifferen t lettersdiffere d significantly (p<0.01).Prevalenc eo fcategorie swit hth esam eletter sdi dno tdiffe r significantly.Categorie swit htw oletter sdi dno tdiffe r inprevalenc ewit h eithero fthes etw oletters .

insocia l situations' (18%), 'Required regularityo feating ' (16%) and 'Restricted foodpattern ' (15%). Forth eNINS-populatio nbarrier-prevalenc ei s alsodisplaye d inFig .1 .Th ecategor y 'Physicaldiscomfor tan dinstabilit yo f eating-pattern' (42%)ha sth ehighes tprevalence .Thi scategor yi sfollowe db y the cluster 'Extra financial costs' (32%), 'Restricted fooduse ' (26%), 'Inadequate foodoffers '(24% )an d'Restricte d foodpattern ' (22%). This cluster isoverlappe d inprevalenc eb yth ecluste ro fcategorie s 'Extra financial costs'(32%), 'Inadequate food offers'(24%), 'Restricted food pattern' (22%)an d'Eatin gi nsocia l situations' (20%). Thecategor y 'Required regularityo feating ' (11%)ha sth elowes tprevalence .

Differencesbetwee nbot hpopulation si nbarrier-prevalenc ea swel la s category-scoreswer e foundfo rthre e categories.Thes e categoriesare : 'Extra financial costs' (INS-population higher;p<0.05) , 'Required regularityo f -59-

eating (iNS-populationhigher ;p<0.01) , and 'Restricted foodpattern ' (NlNS-populationhigher ;p<0.001) . Category-prevalence for the category 'Inadequate foodoffers 'als odiffere d significantly (NINS-populationhigher ; p<0.05). Thislatte r category showed nosignifican tdifferenc e for the two separate barrierscontaine d init .Wit h study-populations significantly differing ingende rw e tested theeffec to fgende r on thebarrier-prevalence . A significanteffec to fgende rwa s found for sevenbarriers .Th e treatment effectwa s separately tested amongme nan dwome n forthes e sevenbarriers .Th e effecto f treatment turned outt ob e similar forme nan dwome n justlik e forthe total-population.

Barrier relatedway so f coping Theprevalenc e of thedifferen tway so fcopin gwit h the fourdietar ybarrier s isdisplaye d inTabl e 3.Th emos t frequentlymentione dwa yo f coping for threebarrier s isdirecte d atcomplianc e (p<0.001).Way s ofcopin g implying non-compliancewer eleas tfrequentl ymentioned .On eexceptio n isth ebarrie r 'feelinghungr ywhil eno tallowe d toeat' .Fo r the INS-population themos t frequentlymentione dwa yo fcopin gwit h thisbarrie r ist otak e something without carbohydrates (P<0.01).Tw oway so f copingwit h thisbarrie r are most prevalent for theNINS-population :takin g somethingwithou t carbohydratesan d taking somethingwit h carbohydrates (P<0.05). For the smoking INS-respondents themos tprevalen twa yo f copingwit h thisbarrie r ist osmok ea cigarette (P<0.05). For the smokingNlNS-respondent st osmok ea cigarett e ismor e prevalent thanno teatin gwhe n feelinghungr ywhil eno tallowe d toea t (P<0.05)an dno tdifferen t inprevalenc e fromtakin g somethingwit ho rwithou t carbohydrates.Th eprevalenc e of theway so fcopin gonl ydirecte d at compliancewit h thedie t forth ebarrie r 'feelinghungr ywhil eno tallowe d to eat' issignificantl y lowest (p<0.001)whe n compared toth eprevalenc e of such wayso f copingwit h theothe rbarriers .Thi sapplie s tobot hpopulations . Compared toth ebarriers : 'having toea twhil e othersd onot 'an d 'having to eat regularly' thebarrie r 'beingallowe d only small amountso fa certain food' issignificantl y lessofte n copedwit hb ydietar y compliance.Fe w differencesbetwee nbot hpopulation s inprevalenc e ofbarrier-relate dway so f copingwer e established. For thebarrie r 'having toea twhil eother sd onot' , theNlNS-population s showsa lowe r prevalenceo f thecomplian tan d intermediateway s ofcoping . -60-

TRBLE3 .Prevalenc e (%) ofway so fcopin gwit hfou rdietar ybarrier samon g Insulin-r-treated(INS ,N=571 )an dNo ninsulin-treate ddiabeti cpatient s(NINS , N=218)a,B7. barriers: wayso fcoping : INS(%) NINS(%) treatment-effect (INS-NINS)

BARRIER1.3 : Feelinghungr ywhil eno tallowe dt oeat . (IC)I tak esomethin gwithou t carbohydrates 32 26 NS (CO)I d ono tea t 24 20 NS (NC)I ea tsomethin gwit h carbohydrates 23 24 NS (IC) Itak ea cigarett e 14 14 NS (32) (47)O BARRIER3.1 : Beingallowe donl ysmal lamount so fcertai nfoods . (CO)I d ono tea tmor etha nallowe d 60 54 (IC)I tak esomethin gelse , thatI a mallowe dt oea t 30 31 NS (IC)I d ono tea tthes efood sanymor e 15 25 NS (IC)I tak ea smuc ha sI want ,an d takeles sfro mother sfood s 12 13 NS (NC)I ea ta smuc ha sI lik e 6 9 NS (IC)I injec textr ainsulin ,an dea t whatI wan t 5

BARRIER5.2 : Havingt oea twhil eother sd ono t (CO)I jus tea t 88 77 (IC)I as kother st oconside rm y timing 40 30 *** (NC)I postpon eeatin g 8 8 NS BARRIER6.2 : Havingt oea tregularl y (CO)I ea tregularl y 89 87 NS (NC)I d ono tea tregularl y 9 12 NS a)thre etype so fway so fcopin gar edistinguishe d CO:Onl ydirecte da tcomplianc e IC:Intermediat eway so fcopin g NC:Non-compliance . b)Fo rreason so fclea rtabulations ,copin gscore swer edichotomized .A wa yo f copingwa sconsidere dprevalen twhe nscore da suse d 'always'o r 'usually'. thetreatmen teffec t (insulinversu snon-insulin )wa steste dwit h Mann-Whitney'stest ,usin gth eorigina l4-poin tscale .NS :n osignifican t differencewa sfound ,* p<0.0 5* *p<0.0 1** *p<0.001 . c)Prevalenc eo fthi swa yo fcopin gamon gthos erespondent stha tsmoke . -61-

DISCUSSION

The resultso f this studyamon ga cross-section ofdiabeti cpatient sar e in agreementwit h the resultso fa nearlie r studyamon g recently diagnosed insulin-treated diabeticpatient s (Chapter 5).Th emos tprevalen tbarrier sar e barrierswit h 'physicaldiscomfor tan d instabilityo feating-pattern 'an d the barrier 'spendingmuc hmone yo n fooddu e toth ediet' .Les sprevalen t are barriers resulting from restricted fooduse .Amon g theleas tprevalen tar e barriers related toeatin g insocia l situations.Barrier swit h ahig h prevalence are leastofte n copedwit hb y compliance.Thi spatter n applies almostequall y tobot h insulin-treated andno n insulin-treated diabetic patients.

This study'scategorizatio no fbarrier s isbase d on the response- characteristics of the respondents,usin gprincipa l componentsanalysis .Thi s isa majo rdifferenc e instudy-desig n compared toth eearlie r study (Chapter 5). Loadingso f thebarrier swer epositiv eo nal l components.Therefore , barriers inon ecategor yar e relativelyhomogeneous .

The category 'physicaldiscomfor tan d instabilityo featin gpattern 'contain s barrierswit h aprevalenc e ranging from 30-50%.Thes ebarrier sar e characterized by the incompatibilitybetwee nvariabilit y inwhe nan dho wmuc h a personwant s toea to nth eon ehan d and the required stabilityo f foodus e on theothe rhand .Thi s incompatibility leadst ophysica ldiscomfort .Thi s alsoapplie st oth ebarrie r 'feelinghungr ywhil eno tallowe d toeat ' categorized inthi s category.Amon g the insulin-treated respondents 67%ha sa BMI <25wit h only tenpercen thavin gbee nadvise da nenergy-restricte ddiet . Inth eearlie r study (Chapter 5)th eprevalenc e of thisbarrie r exceeded40% , with only fewdiabeti cpatient sbein goverweight .Diet swit h settime s toea t setamount so f carbohydratesd ono tagre ewit h thedocumente d realityo fa variability indail yenergy-intak e amongdiabeti cpatient s (Christensene t al., 1983;Henr ye t al., 1981;Tunbridg e &Wetherill , 1970). We assessed theprevalenc e ofbarrier-specifi cway so f coping forth ebarrie r 'feelinghungr ywhil eno tallowe d toeat' .Respondent s areequall y likely to complywit h thedie to r todeviat e fromth edie twhe n confrontedwit h this barrier.Thi scontrast swit h theothe rbarrier swher e compliance isth emos t likelywa y ofcoping .I nadditio nth ebarrie r 'feelinghungr ywhil eno t allowed toeat 'i sleas t likely tob ecope dwit hb ycompliance .Th emos t -62-

likelywa y tocop ewit h thisbarrie r ist oea tfoo dwithou t carbohydrates. Froma patient' sperspectiv e this isa relevantwa yo f copingwhe n the total intake of carbohydrates islimite db y thediet ,a s isth e case for over 70%o f the insulin-treated respondents.B y eating foodwithou t carbohydrates diabetic patientsavoi d toea textr a carbohydrates and simultaneously they satisfy their feeling ofhunger .Carbohydrate-fre e foodsca nb e non-energy-containing foodso r fat containing foods.I na qualitativ e studyo n theway sdiabeti c patients copewit h theirdietar ybarrier sw e found evidence forbot h options (Chapter 4).Lea n &Jame s (1986)sugges t thatdiabeti c patientswil l eat fatty foods,whe n feelinghungr ywhil e extra carbohydrate-intake notbein g an available option. Inthi swa y thisbarrie r promotesa hig h fat intake.Smokin g insulin-treated respondentsar emos t likely toligh ta cigarettewhe n feeling hungrywhil e notallowe d toeat .Fo r thesepatient s thisbarrie r reinforces their smokinghabit . A dietwit h specified timest oea t specified amounts ofcarbohydrate s isbase d on theassumptio n thatdiabeti c patients requirea scheduled eating pattern withdefine d quantities toeat .Prospectiv e studieshav equestione d this assumption. Itwa s concluded thata die twithou tdefine dquantitie s toeat , without a time schedule ofeating ,doe sno tendange r diabetic regulation (Chantelau etal. , 1987;Gallaghar ,Abrair a &Henderson , 1984). The necessity fordiet swit h specified timest oea t specified amounts isno tproven .Suc h dietsd ono tagre ewit h the realityo fvariabilit y indail yenergy-intake . Ways tocop ewit ha barrie r resulting fromsuc hdiet shav ea lowdegre eo f compliance.Thi s typeo fdiet s shouldno tb eprescribe d to insulin-treated diabetic patients,sinc e suchdiet sd ono tcontribut e tohealth .

Non insulin-treated diabetic patientsten d tob eoverweight .A major goal of theirdie t ist ohav e them loseweigh t (Wheeler,1987 ;Mann ,1986 ;Skyler , 1982). Feeling hungry isinevitable .Amon g non insulin-treated diabetic patients theprevalenc e ofbarrier s resulting from instability ineatin g pattern isequa l to theprevalenc e among insulin-treated diabetic patients.I t appears thatbot hno n insulin-treated and insulin-treated diabetic patients perceive a stable eatingpatter nequall yessentia l for the control of their diabetes.Th eprimar ygoa l formos t non insulin-treated diabetic patients is to looseweigh t andeffort s should bedirecte d atattainin g this goal,whic h ishar d enough (Hansen,1988 ;Wheele r et al., 1987;Woo d &Bierman , 1986). -63-

Additionalunnecessar y restrictions shouldno tb e added toth ediet ,sinc e it isdemonstrate d thatadditiona l restrictions lead tohighe rbarrier - prevalence. (Niewind, 1989).

Thebarrie r 'spendingmuc hmone yo n food'prove d tob ehighl yprevalent . Buchenaue t al. (1980)foun d thediabeti cdie t tob e 20%mor eexpensiv e than theaverag e costo fa recommended normaldiet .Th edifferenc ewa s attributed toth e fact thatdiabeti cpatient sar e required toea tplent yo f fruitsan d salads,als oou tof f season,an d toea t low-fat foodswhic har eusuall ymor e expensive.A studyo n the food-use frequency among recentlydiagnose d diabetic patientsdocumente d an increased intakeo fdiabeti c specialty foodsan d low-fat foods (Niewind, 1989). These foodsar e relativelyexpensive .I tca nb e argued that thediabeti cdie t is 'justa health ydiet' ,withou t thenee d for specially required foodsan d thereforeno tmor e expensive thannorma l food. Thispositio nprove st ob eunsoun d froma patient' sperspective .Th e required change indietar y intakedoe s requireextr amoney .Barrie r prevalencewil l decrease only ifextr aattentio n ispai d tolow-cos talternative s forhigh-fa t and high-sugar containing foodswhic har eacceptabl ean d tasting.T oden y the extra financial costo f thediet ,i sno ta productiv e strategy.

Barrierswhic hpresen t themselvesdu e to restricted foodus e showa prevalenc e ranging from 15%t o30% .Th e likingo f food isa n importantdeterminan t in foodus e (Krondl,Colema n &Lews , 1986;Sim s& Shannon ,1989) .A n important tool innutritio neducatio n isth eus e ofexchange-list s (Franze t al.,1987 ; Luiten, 1986).A major goalo f such lists ist oenabl ediabeti c patients to eat their favorite foodswhil e stilleatin ghealthy .Eve nwit h the availability ofexchange-list s itseem shar d topreven t that thediabeti c patientperceive s thediabeti cdie ta sa lis to f 'should nots'o f favorite foods.Th eeffectivit yo f suchexchang e lists ist ob equestione d seriously.

In this studyw e have compared insulin-treated andno n insulin-treated diabetic patients.Bot hpopulation sno tonl ydiffere d inth ewa ythe ymanag e theirblood-glucos e levels.Ther ewer e alsodifference s inage ,gender , duration ofdiabete s andBMI .W e did notappl ya correctio n for these variables.Difference s inage ,duratio no fdiabete san dBM I are characteristic for thedifference sbetwee nbot hpopulations .Insulin-dependen t diabetic patientsbecom ediabeti c ata younge r age.Therefor e ina cross-sectional study theyar e likely tob eyounge r thanno n insulin-dependent diabetic -64-

patients,bu t theywil l alsohav ebee ndiabeti c fora longerperio d oftime . Furthermore,compare d tono n insulin-dependentdiabeti cpatients , insulin-dependent diabetic patientsusuall yar e lessofte noverweight .An y corrections forage ,BM Io rduratio no fdiabetes ,woul dhav e added artificiality.W e tested theeffec to fgende ro nbarrie r prevalence and found ito fn o consequence toth etreatment-effect . For the twobarrier-categorie s 'Required regularityo feating 'an d 'Restricted foodpattern 'th e twopopulation sdemonstrate d a significantdifferenc e in prevalence. Insulin-treated diabeticpatient s reported ahighe r prevalence,u p to25% ,fo rbarrier s resulting from the requiremento fhavin g toea t regularly.Barrier s inthi scategor yar e comparablet obarrier s inth e first category.Th ebarrie r 'Having toea twhil eno thungry ' isth eopposit e of the barrier 'Feelinghungr ywhil eno tallowe d toeat' .Bot hbarrier sar e caused by the incompatibility ofa die t that stipulatesse ttime st oea t seta set amounto f foodan d the realityo fa variabl edail yenergy-intak e (Christensen et al., 1983;Henr ye tal. , 1981;Tunbridg e &Wetherill , 1970). Non insulin-treated diabeticpatient s reportmor eofte n that theyd ono tkno who w much theyar eallowe d toea to fa certai n food,o r that theyd ono tenjo y the food that theyeat .No n insulin-treated diabeticpatient s inthi s study seem tohav e lesspleasur e ineatin g compared toinsulin-treate d diabeticpatients . The study-population ofno n insulin-treated diabetic patientsha sa majorit y ofdiabeti c patientsusin gora lhypoglycemi c agents.Fro mthi s study iti sno t clearwhethe r theconclusion sappl yequall y todiabeti c patientswit h oral hypoglycemic agentsa st odiabeti c patientsusin gonl ya diet . Themajo r resultso fthi s studyappl yalmos tequall y tobot hpopulations , insulinan dno n insulin-treated.Bot hpopulation sar e facedwit ha differen t treatment andbot hpopulation sdiffe r significantly inBMI ,ag e and duration ofdiabetes .Fro ma patient' sperspectiv e itseem stha t theexperience d dietary restrictionsar eno t sodifferent .Similarl yAr y etal . (1986)foun d considerable consistencybetwee n type Ian d type IIdiabeti c patients on self-reported factorsaffectin gadherence .

The respondents'answer s toth equestion so n theway so f copingma yb e influenced by theirwis h togiv e sociallydesireabl e answers:i.e . answers demonstrating compliantbehavior .Effort swer emad e tominimiz e thiseffec t by refraining fromvalu e judgments.Still ,th eabsolut evalue so fway so f coping shouldb e interpretedwit h caution.Therefor eou rmajo r conclusionshav e been based on the relativevalue so f theway so f coping.Thu sw ewer e led toth e -65-

conclusion that theprevalenc e ofdietar ybarrier s is inversely proportional to thedegre e of compliance.Thi s conclusion is inagreemen twit h earlier findings among recentlydiagnose d insulin-treated diabetic patients (chapter 5)an d comparablewit h the findings ofGlasgo we t al. (1986)wh o reported that highlyprevalen t barriers are related tolo wlevel so fadherenc e to the different components of thediabeti c regimen.

Highlyprevalen t dietary barriers canb eattribute d to thedifficult y to fit the ruleso n regularity of eating intodail y lifewit h itsvariability . Other highlyprevalen t barriers are caused by thenee d tolos eweigh t for non insulin-treated diabetic patients,an d the lack toenabl e diabetic patients to eat foods theyenjoy .Thes ebarrier s impair thequalit y of life for diabetic patients. Effortsdirecte d at improving thequalit y of lifeb y preventing highly prevalent dietary barriers,wil l result indiet s thatar emor e likely tob eadhere d to.

ACKNOWLEDGEMENTS

This studywa s supported by grants from theMinistr y ofWelfare ,Healt h and Cultural Affairs,Th eHague ,an d theAgricultura l UniversityWageningen , The Netherlands.W e thank theDutc h DiabetesAssociatio n for their help in recruitment of respondents,Ms .J . Bakker andMs .R .d eVrie s for assistance with data-collection, Mr.J . Burema forhi shelpful l comments on the statistical analysis andMs .M . Eimers for assistancewit h data-analysis.

LITERATURE CITED

Ary DV, Toobert D,Wilso nW . andGlasgo wRE .Patien t perspective on factors contributing tononadherenc e todiabete s regimen.Dia b Care 1986:9,-168-172. Broussard BA,Bas sM A and JacksonMY .Reason s fordiabeti c diet non compliance among Cherokee Indians.J Nut r Educ 1982:14,-56-57. Buchenau H, FrenzR , Schumacher W andGrie s FA.Relativkoste n einer diabetes-diät.Aktuell e Ernährungsmedizin 1980:5,-247-251. Chantelau EA,Frenze nA ,Gössinge r G,Hanse n Ian dBerge r M. Intensive insulin therapy justifies simplification of thediabete sdiet ,a prospective study in insulin-dependent diabetic patients.A m JCli n Nutr 1987:45;985-962. -66-

5.Christense nNK ,Terr yRD ,Wyat tS ,Picher tJ Wan dLoren zRA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Dia bCar e1983:6,-245-250 . 6.Diabete san dNutritio nStud yGrou po fth eEuropea nAssociatio nfo rth e Studyo fDiabetes-1988 .Nutritiona lrecommendation sfo rindividual swit h diabetesmellitus .Dia bNut rMeta b1988:1;145-149 . 7.Fran zMJ ,Bar rP ,Holle rH ,Power sMA ,Wheele rM Lan dWylie-Roset tJ . Exchangelists :Revise d1986 .J A mDie tAsso c1987:87;28-34 . 8.Gallaghe rAM ,Abrair aC an dHenderso nWG .A four-yea rprospectiv etria lo f unmeasureddie ti nlea ndiabeti cadults .Dia bCar e1984:7;557-565 . 9.Glasgo wRE ,McCau lK Dan dSchafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986:9;65-77 . 10.Hanse nBC .Dietar yconsideration sfo robes ediabeti csubjects .Dia bCar e 1988:11;183-188. 11.Henr yCL ,Heato nKW ,Manhir eA an dHarto gM .Die tan dth ediabetic :th e fallacyo fa controlle dcarbohydrat eintake .J Hu mNut r1981:35;102-105 . 12.Hous eWC ,Pendleto nL an dParke rL .Patients 'versu sphysicians ' attributionso freason sfo rdiabeti cpatients 'no ncomplianc ewit hdiet . DiabCar e1986:9;434 . 13.Jenn yJL .Difference si nadaptatio nt odiabete sbetwee ninsulin-dependen t andnon-insulin-dependen tpatients :implication sfo rpatien teducation . PatientEducatio nan dCounselin g1986:8;39-50 . 14.Kisseba hA an dSchectma nG .Polyunsaturate dan dsaturate dfat , cholesterol,an dfatt yaci dsupplementation .Dia bCar e1988:11;129-142 . 15.Krond lM an dColema nP .Socia lan dbiocultura ldeterminant so ffoo d selection.Pro gFoo dNut rSe i1986:10,-179-203 . 16.Lea nME Jan dJame sWPT .Prescriptio no fdiabeti cdiet si nth e1980s . Lancet1986:l,-723-725 . 17.Lewi sCJ ,Sim sL San dShanno nB .Examinatio no fspecifi cnutrition/healt h behaviorsusin ga socia lcognitiv emodel .J A mDie tAsso c1989:89,-194-202 . 18.Lockwoo dD ,Fre yML ,Gladis hN Aan dHis sRG .Th ebigges tproble mi n diabetes.Dia bEdu c1986:12;30-33 . 19.Luite nTE .D etaa kva nd ediëtis tbi jd ediabeteseducatie .Nederland s Tijdschrvoo rDië t1986:41;150-152 . 20.Man nJI .Simpl esugar san ddiabetes .Dia bMe d1987:4;135-139 . 21.Man nJI .Dietar yadvic efo rdiabetics :A perspectiv efro mth eUnite d Kingdom.J A mCol lNut r1986:5;l-7 . 22.Marascuil oL Aan dMcSweene yM .Nonparametri can ddistribution-fre emethod s forth esocia lsciences .Monterey :Brook/Col epublishin gcompan yin c1977 . 23.McCau lKD ,Glasgo wR Ean dSchafe rLC .Diabete sregime nbehaviors : predictingadherence .Me dCar e1987:25,-868-881 . 24.Netherland sCentra lBurea uo fStatistics .Statistica lyearboo ko fth e Netherlands1987 ,p 97 .Th eHague :Staatsuitgeverij ,CBS-publications . 1988. 25.Niewin dAC .Diabete san ddiet :foo dchoices .Thesis ,Wageninge n AgriculturalUniversity ,Th eNetherland s1989 . 26.Norusi sMJ .SPSS/PC+ ,Chicago:SPS Sinc .1986 . 27.Nutta lFQ ,Maryniu kM Dan dKaufma nM .Individualize ddiet sfo rdiabeti c patients.An nInter nMe d1983:99,-204-207 . 28.Nutta lFQ .Die tan dth ediabeti cpatient .Dia bCar e1983:6;197-207 . 29.Schäfe rLC ,Glasgo wRE ,McCau lK Dan dDrehe rM .Adherenc et oIDD M regimens:relationshi pt opsychosocia lvariable san dmetaboli ccontrol . DiabCar e1983:6,-493-498 . 30.Skyle rJS .Dietar ymanagemen to fdiabete smellitus .In :Diabete s managementi nth e80's :Th erol eo fhom ebloo dglucos emonitorin gan dne w insulindeliver ysystems. ,e dCM . Peterson, p126-151 .Praege r Scientific,Philadelphi a1982 . -67-

31.Tunbridg eR an dWetheril lJH .Reliabilit yan dcos to fdiabeti cdiets .B r MedJ 1970,-78-80 . 32.Wheele rML ,Delahanth yL an dWylie-Roset tJ .Die tan dexercis ei n noninsulin-dependentdiabete smellitus :Implication sfo rdietitian sfro m theNI HConsensu sdevelopmen tconference .J A mDie tAsso c1987:87;480-485 . 33.Woo dF Can dBierma nEL .I sdie tth ecornerston ei nmanagemen to fdiabetes ? NewEng lJ Me d198 6,-1224-1227 . -68-

CHAPTER 7

DIABETES AND DIET: THE EFFECT OF CONTINUOUS SUBCUTANEOUS INSULIN INFUSION (CSII) AND A LIBERALIZED DIET ON THE PREVALENCE OF DIETARY BARRIERS

Friele R.D.,Niewin dA.C. ,Chantela uE. ,Hautvas t J.G.A.J.,Edem a J.M.P.

ABSTRACT

Inthi s studyw einvestigate d whether diabetic patients treated with continuous subcutaneous insulin infusion (CSII)an da liberalize d diet would experience lessdietar y barriers compared todiabeti c patients with conventional insulin therapy.Fo rthi spurpos ew eselecte da grou po f4 3 patientswh ower e treatedwit h CSIIan da liberalize d dietan da pair-matched group followinga conventiona l therapy.W efoun d thatCSII-treate d diabetic patients experience significantly lessdietar y barriers comparedt o diabetics treatedwit h conventional insulin therapy. Thisdifferenc ei s primarily explained byth egreate r flexibility CSII treated diabetic patients have inthei r decisions regardingwhe nan dho wmuc h theywis ht oeat . CSII-treated diabetic patients report lessbarrier swit h thecos to fth ediet . Bothpopulation s showedn odifferenc e inprevalenc e ofbarrier s causedb y restrictions infood st ochoos e from. Iti sdiscusse d thatCSI I treatment with a liberalized diet,b yimprovin g glucose controlbu tals ob ydecreasin g barrier prevalence,wil l contribute toth equalit yo flif e forth ediabeti c patient.

INTRODUCTION

Traditionally, thedie tha sbee nth emos tdifficul t aspecto fth eregime no f insulin-treated diabetic patients (1-4). Ina pilot-stud y among10 4insulin - treated diabetic patientsw emad ea systemati c inventoryo fth epossibl e barriers diabetic patients experiencewit h their diets.Th ebarrier sw efoun d were feelingso fphysica l discomfort,th ecost so fth ediet ,barrier sdu et o restrictions infood st ochoos e from,th erequire d regularity ofeatin gan d social barriers(5) . -69-

A studyo fdiabeti cpatient streate dwit h long-term subcutaneous insulin infusion (CSII)reporte dpositiv e healthoutcome s (6).Th edie t of these patientswa s relatively liberalized compared tothei rearlie r conventional diets.A favorable significantdecreas ewa s found inmea nHbA - -values from 7.7%(se= 0.1) before starting theCSI I to6.7%(s e= 0.1) at followu p togetherwit h a favorable impacto nth eaverag ehospitalizatio n rateso f patients. Itwa s suggested thatliberalize d dietsmigh tdecreas e thechanc e that dietary barrierswil lpresen t themselves compared tocalori cdefine d dietswit h set timest oea t (7,8). Ina recenteditorial ,Hom e (9)calle d for studies evaluating theeffec to fdiabeti c treatmento nqualit yo f life.I nthi s study we addresson easpec to fth equalit yo f life,whic h isqualit y of life associatedwit ha free choiceo f foodsan dmealtime .A diabeticdie tma yb e potentially harmful to thequalit yo flif ebecaus e itcause sdietar ybarriers . Thesedietar ybarrier s impingeupo naspect so f thenorma l lifeo f the diabetic patient,suc ha shi sphysica lwell-being ,hi senjoymen to f foodan d social relations. Inthi sstud yw e assessedwhethe r diabetics treatedwit ha combination ofCSI I and a liberalized dietwoul d experience lessdietar ybarrier s compared to diabetic patientso nconventiona l insulin therapy.

METHODS

Subjectsan ddiabeti c regimen Twopopulation swer e compared on theprevalenc e ofexperience d dietary barriers.Th e firstpopulatio nwa sa randomsampl eo f 50,draw n froma populationo f 125CSIl-treate ddiabeti c patientswit h a liberalized dietan d treated at theDepartmen to fNutritio n andMetabolism ,Universit y of Düsseldorf.CSI I treatmentwa s started atth e requesto fpatient s already familiarwit h intensified insulin injection therapy (10)an dwillin g to performbloo d glucose selfmonitorin g atleas t four timesdaily .CSI Iwa s initiated during a 5-dayin-patien t groupteachin g course (11)o n the specific techniqueso f insulinpum ptherapy .Die twa s liberalized toa certainextent : No caloric restrictionswer egive nan dweigh tmaintenanc ewa s self-regulated. Patientswer e advised adie t inwhic h fat,protei nan d carbohydrates contributed respectively 35%,15 %an d 50%o f totalenergy .Rapidl y absorbed sugarswer e restricted except forcorrectio n ofhypoglycemia .Th e carbohydrate -70-

contento f foodswa sassesse d in12-gra mcarbohydrat eunit swhic hwer e tob e balancedwit hboluse so f regular insulin.N oplanne d food-exchangeswer e provided.Th epatient swer e allowedvariabilit y of timingan dnumbe r ofmeal s (12). The secondpopulatio nwa sa sample froma databas ewit h 540 randomly selected insulin treateddiabeti cpatien tmember so fth eDutc hDiabete sAssociatio n (DDA). Fromthi spopulatio n respondentswer ematche d toth eCSI I respondents asclosel ya spossibl e onth evariables :gender ,educationa l level,age , duration ofdiabete san dbod ymas s index (BMI). Since the control-groupwa sdraw n fromth e fileso f theDDA ,n o information wasavailabl e on themetho do fdiabete seducation ,method so f self-control or dietaryadvice .However ,sel f reporteddat awer eavailable .I nth e control-group for 31 respondents (72%)insuli n therapy consisted ofa maximu m of two insulin injectionspe rday .Thirty-seve n respondents (86%) reported assessing blood-glucosevalue s lesstha nonc ea day .Thes e figures show that thegrea tmajorit yo f thispopulatio n iso n conventional insulin-therapy. The populationwil lb e referred toa sdiabetic so nconventiona l treatment (CONV).

Variables Inthi s studyw euse d two setso fvariables .Th e first setconsiste d of general and regimen characteristics.Thes ear e gender,educationa l level,age , duration ofdiabetes ,BMI ,dietar yadvice ,perceive dmos tdifficul taspec t of thediabeti c treatmentan dperceive d health status.Al lvariable swer e self- reported ina standardize d questionnaire.BM Ian dHbA , valueswer e retrieved fromth epatien t files forth eCSI I respondents.HbA . wasassesse d as described earlier (6).Sinc e theCONV-populatio nwa sdraw n from the fileso f theDDA ,n oHbAl . valueswer eavailable .

The second seto fvariable s consisted of2 1dietar ybarriers .Thes e barriers were derived froma qualitativ e inventoryo fpossibl e dietarybarrier s among 104 insulin-treated diabetic patients (5).Thes ebarrier s relate todifferen t areaso fhuma n functioning thatar eaffecte d by theprescriptio n ofa diet , and todifferen taspect s of thedie tcausin g thesebarriers .Area s ofhuma n functioning thatar eeffecte d are feelingso fbodil ydiscomfor t sucha s feelinghungr yo r sick and financial costso f thediet .Barrier sar e the resulto f restrictions infood st ochoos e fromo rbarrier sma y present themselvesbecaus e of the required regularityo feating .Socia l barriersar e caused by inadequate foodoffer so r socialbarrier soccu rwhil e eating with -71-

otherpeople .Th edietar ybarrier shav ebee ndisplaye di nTabl e2 .Th e responseforma tfo rth ebarrier swa sa four-poin tscale :N obarrie r/ n o barrier,bu tinconvenien t/ a barrie r/ a majo rbarrier .

Statisticalanalysi s Datawer eanalyze dusin gSPSS/PC +(13) .Fo rth erespondents 'characteristic s frequencieso ri fapplicabl emean swer ecalculated .Prevalenc ewa scalculate d foreac hbarrier .A barrie rwa sconsidere dprevalen twhe ni twa sscore da s' a barrier'o r 'amajo rbarrier' .I nadditio nth ebarrier swer edivide dint o sevencategories .Thes ecategorie swer ebase do nth ecategorizatio no fth e responseo ndietar ybarrier so f78 9diabeti cpatient so nwhic hprincipa l componentsanalysis ,followe db yvarimax-rotatio nwa sperformed .Fo reac ho f theseve ncategorie sth eaverag eprevalenc eo fbarrier swa scalculate di n ordert oyiel da category-prevalence . Thetota ldietar ybarrie rscor ewa scalculate db yaddin gal lprevalen t barriersfo reac hrespondent .W eteste dfo rdifference susin gnon-parametri c statistics,sinc enormalit yo fth edat acoul dno tb eassume dan dappropriat e non-parametrictest sar eavailable .Difference si nprevalenc ebetwee nbot h populationsi nrespondents 'characteristics ,prevalenc eo fdietar ybarriers , categoryprevalenc ean dtota ldietar ybarrie rscor ewer eteste dusin g Wilcoxon'ssigned-rank stest ,includin gzer odifference san dcorrectin gfo r ties(14) .Tw otaile dprobabilitie swer eassesse dfo rtestin gdifference si n respondents'characteristics .Th ehypothesi so fn odifferenc ebetwee nth e prevalenceo fdietar ybarrier si nbot hpopulation swa steste dagains tth e alternativehypothesi so fa lowe rbarrier-prevalenc eamon gth eCSI I population.Therefor eone-taile dprobabilitie swer ecalculated .

RESULTS

Wereceive dquestionnaire sfro m4 3(86% )CSI Irespondents .O fthes e2 6wer e male,mea nag ewa s33. 5(S D9.4 )years ,mea nduratio no fdiabete s15. 8(S D 2 7.2)years ,mea nBM I23. 4(S D2.0 )kg/m an dmea nHbA lc6.95 % (SD1.0 ) (normal 95%confidenc einterval :4.07-6.03 )(15) . TheCONV-grou pdi dno tsho w differencesregardin gth ematchin gvariables :age ,duratio no fdiabetes ,BMI , genderan deducationa llevel .Mea nag ewa s34. 4year s(S D9.1) ,mea nduratio n 2 ofdiabete swa s14. 8year s(S D8.6 )an dmea nBM Iwa s23. 1kg/ m (SD2.2) . Respondents'regime ncharacteristic sar edisplaye di nTabl e1 .O fth eCSI I -72-

patients 31%reporte d beingo na sugar-freediet ,25 %reporte d tob eo na carbohydrate-limited dietan d 38%reporte d theirdie t tob ea liberalized diet.O f thediabeti cCONV-grou p30 %reporte d tob eon ea sugar-free diet while 19%reporte d tob eadvise d acarbohydrat e limiteddiet .Sixty-thre e percent reported theirdie tt oprescrib e set timest oea t setamount s of carbohydrates.Severa l respondentso f thecontro l groupmentione d more than oneo f these characteristics.Th emeasurin go rblood-sugar so r sugar inurin e

TABLE 1.Regime ncharacteristic san dperceive d healtho fdiabeti cpatient s withCSI I treatment anda pair-matche ddiabeti cpopulatio nwit h conventional therapy (CONV) (N=2x43).

CSII CONV group group

Reporteddiet : Dietwit h settimin g+ quantitie s 0 63a) Dietwit h noadde d sugar 31 30 Carbohydrate limited 25 19 Energy restricted 3 2 Liberalized diet 38 0 Other 6 9

Perceivedmos tdifficul t aspecto ftreatment : Measuringblood-sugar so r sugar inurin e 35 28 Insulin injections 9 14 Diet 19 51 Other 16 2 None of these 21 5

Perceived healthstatus : Feelver y healthy 14 7b) Feelhealth y 58 49 Feel sometimeshealthy,sometime sunhealth y 26 37 Feel unhealthy 2 5 Feelver yunhealth y 0 2 a)du e tomultipl e response the totalma yamoun t to>100 % b)N o significant difference betweenbot hpopulation swa s found. was feltt ob e themos tdifficul t aspecto f the regimenb y 35%o f theCSI I population.Othe r aspectso f thetreatmen twer e feltt ob e themos t difficult aspectb y fewer of theCSII-treate d respondents.Th edie twa s considered the mostdifficul t aspecto f the regimenb yabou thal f of theCONV-population , followed bymeasurin g blood-sugarso r sugar inurin e forabou ton e third of thepopulation . Bothpopulation sdi d notdiffe r significantly inperceive d health status:mor e thanhal f ofbot hpopulation s considered themselveshealth yo rver yhealthy . -73-

Themea nnumbe ro fexperience ddietar ybarrier sfo rth eCSH-populatio nwa s 2.6 (SD2.9) ,whic hi ssignificantl ylowe rcompare dt oth emea nnumbe ro f prevalentdietar ybarrier samon gth eCONV-population :5. 5 (SD4.3 ) (Table 2).

TABLE2 .Prevalenc eo fperceive ddietar ybarrier s (%)wit hth ediabeti cdie t amonginsuli ntreate ddiabeti cpatients ,wit hCSI Ian da pair-matche dgrou p withconventiona linsuli ntherap y(CONV )

Prevalence(% ) CSIIgrou p CONVgrou p

CATEGORY1 :BODIL YDISCOMFOR TAN DINSTABILIT YO FEATIN GPATTERN . 1.1.Disruptio no fdail yroutin emake si t 28 51* difficultt ofollo wth edie t 1.2.Feelin gil lbecaus eo firregula reatin g 14 38** * 1.3.Feelin gil lbecaus eo featin gmor etha nallowe d 23 34* 1.4.Feelin ghungr ywhil eno tallowe dt oea t 12 29* *

CATEGORY2 :FINANCIA LCOST SO FTH EDIET . 2.1.Spendin gmuc hmone yo nfoo ddu et oth edie t 45* *

CATEGORY3 :RESTRICTE DFOO DUSE . 3.1.Wantin gfood sexclude db yth edie t 19 37* * 3.2.I ti sdifficul tt osta yawa yfro msweet s 19 35~ 3.3.Bein gallowe donl ysmal lamount so f certainfood s 19 22~ 3.4.Havin gt oea tlea nfood s 9 17

CATEGORY4 :INADEQUAT EFOO DOFFERS . 4.1.Hav et osa yn ot ofoo doffer s 12 12~ 4.2.Other sforge tt obu yappropriat efood s 2 14~

CATEGORY5 :EATIN GI NSOCIA LSITUATIONS . 5.1.Other sinterfer ewit hm yeatin g 9 33* 5.2.Hav et oea twhil eother sdon' t 5 27 5.3.Havin gt oexplai nth edie tt oother s 9 19~

CATEGORY6 :REQUIRE DREGULARIT YO FEATING . 6.1.Havin gt oea tregularl y 19 31* 6.2.Havin gt oea twhil eno tfeelin ghungr y 21 27 6.3.Alway shavin gt otak efoo dalon g 19 27~ 6.4.Havin gt oea tmuc ho fa certai nfoo d 2 5

CATEGORY7 :RESTRICTE DFOO DPATTERN . 7.1.D ono tkno who wmuc ht oea to fcertai nfood s 0 30* * 7.2.No tabl et oenjo yfoo d 5 17 7.3.Fin deatin gborin g 5 15*

Numbero fperceive dbarrier s (Mean+ SD ) 2.6+ 2. 9 5.5+ 4.3* *

Forreason so fclea rdispla yscore so nth edietar ybarrie rscal ewer e dichotomized.A barrie rwa sconsidere dprevalen twhe nscore da s' abarrier 'o r 'amajo rbarrier' .Test swer eperforme dusin gth e4-poin t scale.* p<0.0 5 ** p<0.01 ***p<0.00 1Wilcoxon' ssigne drank stest ,one-tailed . -74-

Forth eCS U treatedpopulatio nth ethre ebarrier swit hth ehighes tprevalenc e were (Table 2): (1)'Disruptio no fdail yroutin emake si tdifficul tt ofollo wth ediet '(28% ) (2)'Feelin gil lbecaus eo featin gmor etha nallowed '(23% ) (3)'Havin gt oea twhil eno tfeelin ghungr y '(21%).

Forth econtrol-populatio nth ethre emos tprevalen tbarrier swere : (1)'Disruptio no fdail yroutin emake si tdifficul tt ofollo wth ediet'(51% ) (2)'Spendin gmuc hmone yo nfoo ddu et oth ediet '(45% ) (3)'Feelin gil lbecaus eo firregula reating'(38% )

Barrier-prevalence forth eCSI Ipopulatio nwa ssignificantl ylowe rfo r1 0 barriersou to f21 ,whe nse tagains tbarrier-prevalenc ei nth e control-population (p<0.05)(Table 2). Thesebarrier swere : - 'Disruptiono fdail yroutin emake si tdifficul tt ofollo wth ediet' . - 'Feelingil lbecaus eo firregula reating' . - 'Feelingil lbecaus eo featin gmor etha nallowed' . - 'Feelinghungr ywhil eno tallowe dt oeat' . - 'Spendingmuc hmone yo nfoo ddu et oth ediet' . - 'Wantingfood sexclude db yth ediet' . - 'Othersinterfer ewit hm yeating' . - 'Havingt oea tregularly' . - 'Dono tkno who wmuc ht oea to fcertai nfoods' . - 'Findeatin gboring' .

1. Bodily discomfort and instability j^gg^jS^^g^jpl of eating pattern

2. The financial costs of the diet ^T]**

3. Restricted food use

4. Inadequate food offers

5. Eating in social situations

6. Required regularity of eating

7. Restricted eating pattern 1 30 40 50 CSII-population category prevalence (%) I6ÖÓÖÓI diabeticcontrol-populatio n FIGURE1 .Mea nprevalenc eo fdietar ybarrier-categorie s (%) amonginsuli n treateddiabeti cpatients ,wit hCSI Ian da pair-matche ddiabeti ccontro l population(N= 2x 43) . Differencesi ncategory-prevalenc ewer eassesse dwit hwilcoxon' ssigne drank s test (one-tailed).Fo rreason so fclea rdispla ycategor yprevalenc ei sprinte d asa mea npercentag efo reac hcategory . NSno tsignificant ,* p<0.05 ,**p<0.01 ,***p<0.001 . -75-

Figure 1.display s thecategory-prevalence . Fourou to f seven categories showeda lowerprevalenc e forth eCSH-population . These categoriesare : - 'Bodilydiscomfor tan d instability ofeatin gpattern' . - 'The financial costso f thediet' . - 'Eating insocia lsituations' . - 'Restricted eatingpattern' .

DISCUSSION

Inthi sstud y itwa s found thatt oCSI Itreate ddiabeti cpatient swit ha mor e or less liberalized diet,th edie t isno tth emos tdifficul taspec t of the treatment.Thi s isi ncontras twit h the findingamon g thepopulatio nwit h conventional insulintherap yan dearlie r findings (1-4). Furthermore, CSII-treateddiabeti cpatient swit ha liberalizeddie texperienc e fewer dietarybarrier scompare d todiabeti c patientswit h conventional insulin therapymatche d onage ,duratio no fdiabetes ,bod ymas s index,gende r and educational level.HbA. . valueso f the sampleo fCSII-patient si nthi s study are similar toth evalue s reported byChantela u etal . (6)demonstratin g satisfactoryblood-glucos e regulation.Therefor e itma yb econclude d thatCSI I incombinatio nwit ha liberalized dietwil l lead toa decreas e inprevalenc e ofdietar y barrierswithou t endangering somatichealth .

All barriers incategor y 1 showed a significant lowerprevalenc e among the CSII-patientgroup .Thes ebarrier saris e from thedifficult y tocombin e the required stabilityo f foodus eprescribe d inth edie twit h the irregularities ofdail y life resulting infeeling so fbodil ydiscomfor t (16-18). For the CSH-populationcombinin g thedie twit h the irregularities ofdail y life is lessproblemati c compared toth eCONV-group .Th edie t for theCSI I population allows thepatient s tovar y their timingan d thenumbe r ofmeals .Two-third s of theCONV-populatio n reported tohav ebee nadvise d adie twit h settime so n which toea t setamount so fcarbohydrates ,wherea sno ton e of thepatient s of the CSII-treated population reported sucha diet .Greate r meal-time flexibility forCSI I treateddiabeti cpatient swa s reportedb y Capper et al. (8). Lewise tal .(19 )studie d treatment satisfaction ofdiabeti cpatient swh o self-selected their treatment:CSI I treatment,conventiona l insulin therapyo r intensified insulin therapy.A comparisono f thesepopulation s showed that CSII treateddiabeti cpatient swer emor e satisfied compared toth e diabetic patientso na conventiona l insulintherap yo r an intensified insulintherapy . A major factor contributing tothi shighe r satisfactionwa s the perceived -76-

improvedcompatibilit yo f theCSI I treatmentan d lifestyle.Greate r flexibilityo f life styleo fCSII-treate dpatient s results inexperiencin g fewerdietar ybarriers .I nspit eo f thisth e threemos tprevalen tdietar y barriersamon g theCSI Ipopulatio n turned out tobe : 'Disruptiono fdail y routinemake s itdifficul t to followth ediet' , 'Feeling illbecaus eo f eating more thanallowed' ,an d 'Havingt oea twhil eno t feelinghungry' .Thi s finding demonstrates that the requiredbalanc eo f insulindosag e and foodus e still is themajo r factor incontributin g toth eprevalenc e ofdietar ybarrier s for thispopulation ,althoug hth eprevalenc e of thesebarrier samon g the CSII- population islowe r compared toth eCONV-population .

Differencesbetwee nbot hpopulation s regardingbarrier sdu e to restrictions in foodst ochoos e from (category2 an d 3)ar e less clear cut.Th eprevalenc e of thebarrie r related toth ecos to f thedie t issignificantl y lower for the CSIIpopulation .Buchena ue t al. (20)foun d the traditionally prescribed diabeticdie t tob e20 %mor eexpensiv e thanth eaverag e costo fa recommended normaldiet .Thi sdifferenc ewa smainl yattributabl e toth e requirement for diabeticpatient s toea tplent y offruit san d saladsan d low-fatvarietie s of foods,whic h areusuall ymor e expensive.Therefore ,th e lowerbarrier - prevalence on thecos to f thedie t ist ob eexplaine d byassumin g thatth e CSII-treatedpatien t isallowe dmor e freedomi nfood st ochoos e from.O n the other hand,th eprevalenc e of category 3 (restricted fooduse )i ssimila r in bothpopulations .Thi s factcontradict slas tmentione d assumption.Thi slac k ofdifferenc ema yb eattribute d toth econtinuin g influence of thedietar y pattern thatha d beenadopte d by thepatient sbefor e CSII-treatmentwa s started.Th e sugar restriction thatwa sconsidere d anessentia l element of the dietb yon e thirdo f theCSI Ipopulatio nca nb e the resulto f this continuing influence.Thi sstud y isno t conclusiveabou t thefac twhethe r orno t CSII-treatmentwit ha mor e or less liberalized dietwil l contribute togreate r flexibility infood s tochoos e from.

Only one significant differencewa s found inbarrie r prevalencewher e others are concerned.Thi slac ko fdifference sma yb epartl ydu e toth ealread y low prevalence of suchbarrier samon g theCONV-population . Furthermore,th ewa y others react toward adiabeti c patient isno tnecessaril y influenced by the kind of treatment,foo doffer s canb eequall yinadequate . -77-

This study relied on self reported data,thi sbein g theonl ywa y to assess dietary barriers experienced bydiabeti c patients inthei rdail y lives. Such data canb e subject to response-tendencies. TheCSII-treate d respondents in this studywer e self selected,wit h a special treatment and education. It is likely that these respondents appreciate their special regimen because of the special character of the treatment and therefore theyma y report less dietary barriers.Thi s tendency mayhav e influenced our results:w e found a lower average barrier prevalence among theCSII-treate d population. Butno t all results canb e explained by sucha tendency.A response-tendency isno t likely to influence juston e specific cluster ofbarriers .W e found differences in category-prevalence between both populations for some categories,bu tno t for all.W e foundmajo r differences inbarrie r prevalence that could be attributed to agreate r meal-time flexibility forCSI Ipatient s and adifferenc e in barrier-prevalence on the costso f thediet .W e found nodifferenc e in category prevalence ofbarrier s related to restricted fooduse . Furthermore perceived health statusdi d notdiffe r between bothpopulations .A supposed response tendency would most likelyhav e lead toa bette r health evaluation among theCSI I population,whic hwe ,however ,di d not find.Therefore ,w e conclude that,althoug h some effect ist ob eexpecte d froma response-tendency,th emajo r differences inbarrie r prevalence aredu e to specific differences indiabeti c regimenbetwee n the CSII-treated population and theCONV-population .Th e flexibility ofCSI I treatment together with a liberalized diet causes lessdietar y barriers fordiabeti c patients. CSII treatmentwit h a liberalized diet contributes toth equalit y of life ofdiabeti c patientsno t onlyb y improving their health perspective but alsob ypositivel y influencing thedegre e towhic h they experience dietary barriers.

ACKNOWLEDGEMENTS

This studywa s supported bygrant s from theMinistr y ofWelfare ,Healt h and CulturalAffairs ,Th eHague ,an d theAgricultura l UniversityWageningen , The Netherlands.W e thank theDutc h DiabetesAssociatio n for their help in recruitment of respondents. -78-

REFERENCES

1.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 2.Hous eWC ,Pendleto nL ,Parke rL .Patients 'versu sphysicians 'attribution s ofreason sfo rdiabeti cpatients 'non-complianc ewit hdiet .Dia bCar e 1986;9:434. 3.Jenn yJL .Difference si nadaptatio nt odiabete sbetwee ninsulin-dependen t andnon-insulin-dependen tpatients :implication sfo rpatien teducation . PatientEducatio nan dCounselin g1986;8:39-50 . 4.Lockwoo dD ,Fre yML ,Gladis hNA ,His sRG .Th ebigges tproble mi ndiabetes . DiabetesEducato r1986;12:30-33 . 5.Niewin dAC .Diabete san dDiet :Foo dchoices .Thesis ,Wageninge n AgriculturalUniversity ,Th eNetherland s1989 . 6.Chantela uE ,Sprau lM ,Müllhause rI ,Gaus eR ,Berge rM .Long-ter msafety , efficacyan dside-effect so fCSI Itreatmen tfo rinsulin-dependen tdiabete s mellitus:a on ecente rexperience .Diabetologi a (inpress) . 7.Chantela uEA ,Bockhol tM ,Li eKT ,Broerman nC ,Sonnenber gGE ,Berge rM . Dietan dpump-treate ddiabetes :a long-ter mfollow-up .Diabet eMeta b 1983;9:277-282. 8.Cappe rAF ,Heade nSW ,Bergensta lRM .Dietar ypractice so fperson swit h diabetesdurin ginsuli npum ptherapy .J A mDie tAsso c1985;85:445-449 . 9.Hom eP .Toward sth eultimat eoutcome .Diabeti cMe d1989;6:11 . 10.Müllhause rI ,Bruckne rI ,Berge rM ,Chet aD ,Jörgen sV ,Ionescu-Tirgovist e C,Schol zV ,Minc uI .Evaluatio no fa nintensifie dinsuli ntreatmen tan d teachingprogramm ea sroutin emanagemen to ftype- l (insulin-dependent) diabetes:th eBucharest-Düsseldor fstudy .Diabetologi a1987;30:681-690 . 11.Sonnenber gGE ,Chantela uEA ,Berge rM .Educationa laspect so fpum p treatmenti ntype- Idiabeti cpatients .In :Assa lJPh ,Berge rM ,Ga yN , CanivetJ ,eds .Diabete seducation .Amsterdam ,Excerpt aMedic a1983:70-77 . 12.Chantela uE ,Sonnenber gGE ,Stanitzek-Schmid tI ,Bes tF ,Altenäh rH , BergerM .Die tliberalizatio nan dmetaboli ccontro li ntyp eI diabeti c outpatientstreate db ycontinuou ssubcutaneou sinsuli ninfusion .Dia bCar e 1982;6:612-616. 13.Norusi sMJ .SPSS/PC+ .Chicago ,SPS Sinc. ,1986 . 14.Marascuil oLA ,McSweene yM .Nonparametri can ddistribution-fre emethod s forth esocia lsciences .Monterey :Brook/Col ePublishin gCompan yInc .197 7 15.Littl eRR ,Englan dJD ,Wiedmeye rHM ,McKenzi eEM ,Pettit tDJ ,Knowle rWC , GoldsteinDE .Relationshi po fglycosylate dhemoglobi nt oora lglucos e tolerance.Diabete s1988;37:60-64 . 16.Christense nNK ,Terr yRD ,Wyat tS ,Picher tJW ,Loren zRA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Dia bCar e1983;6:245-250 . 17.Henr yCL ,Heato nKW ,Manhir eA ,Harto gM .Die tan dth ediabetic :th e fallacyo fa controlle dcarbohydrat eintake .J Hu mNut r1981;35:102-105 . 18.Tunbridg eR ,Wetheril lJH .Reliabilit yan dcos to fdiabeti cdiets .B rMe d J1970i:78-8 0 19.Lewi sKS ,Bradle yC ,Knigh tG ,Boulto nAJM ,War dJD .A measur eo f treatmentsatisfactio ndesigne dspecificall yfo rpeopl ewit h insulin-dependentdiabetes .Diabeti cMe d1988;5:235-242 . 20.Buchena uH ,Fren zR ,Schumache rW ,Grie sFA .Relativkoste neine r diabetes-diät.Aktuell eErnährungsmedizin .1980;5:247-251 . -79-

CHAPTER 8

DISCUSSION

This thesisdeal swit hbarrier sdiabeti cpatient sexperienc ewit h theirdiet , and thewa ythe ycop ewit h thesebarriers .W econsidere d thatknowledg e about thesebarrier swoul db ea firs t stepi npreventin g them.Thi sma ycontribut e todiet s thatar epleasurabl et oliv ewit han deasil yadhere d to,an di tma y contributet odietar yeducatio n leadingt osuc hdiets .Furthermor ew e considered thatknowledg eo fth ebarrier sexperience dwoul dyiel da ninsigh t intoth econstraint s thatth egenera lpubli cexperienc ewhe nadvise dt ochang e their food-useb yhealt hmessages . Thisdiscussio ni smad eu po ffou rparts .Paragrap h8. 1describe sth edesig n ofth estudy .Paragrap h8.2 .i sa discussio no fth eresults ,followe di n paragraph8. 3b ya discussio no fth econsequence sfo rdietar y educationfo r diabetic patients.I nparagrap h8.4 .th erelevanc eo fstudyin g dietary barriersi scontraste d againstothe r studieso nhuma n food selection.Th e finalparagrap h (8.5)i sreserve d forth econsequence so fthi s studyfo r nutritioneducatio ni ngeneral .

8.1. Studydesig n

Thisprojec twa sdesigne dt oasses sth eprevalenc eo fdiabetics 'dietar y barriersan dth eway so fcopin gwit h thesebarriers .Thi sprojec t consistso f different studies.Thes ear edisplaye d inAppendi x1 . Itwa sstarte dwit hqualitativ e inventorieso fpossibl edietar ybarrier samon g insulin-treatedan dno ninsulin-treate d diabetics (Study 1). Alsoa ninventor y wasmad eo fth eway so fcopin gwit h thesebarrier s (Study2 ;Stud y3 ,Ste p1) . Such inventorieswer e considerednecessar ya sa basi sfo rstudie so n prevalence. Subsequently barrier prevalencean dth eprevalenc eo fth eway so fcopin gwit h differentdietar ybarrier swer e assessedi nStud y3 amon g recently diagnosed diabetic patients.T oreproduc eth efinding s fromStud y3 ,barrie r prevalence andth eprevalenc eo fway st ocop ewit hthe mwer eassesse di na cross-sectional diabeticpopulation ,bot h insulin-treatedan dno n -80-

insulin-treated (Study 4), varying inag e andduratio n ofdiabetes . InStud y 5i twa s testedwhethe r liberalization ofa die twoul d lead toa decrease inbarrier-prevalence .

Inthi sparagrap h (8.1.)thre emethodologica l issueswil l bediscussed : questionnaire development,th e study-population and themetho d of assessing barrier-prevalence.

8.1.1.Questionnair e development Firsta qualitativ e studywa s carried outt omak ea n inventoryo f possible dietarybarrier s ina grou po f10 4 insulin-treated anda grou po f 58no n insulin-treated diabeticpatient s (Study1 ) (1).Thi s inventorywa suse d to construct aquestionnair e ondietar ybarrier sexperience d bydiabeti c patients (seeAppendi x 2). Using thisquestionnair e barrierprevalenc ewa s assessed among 72 insulin-treated diabetic patients,shortl yafte r thediagnosi so f theirdiabetes ,an d oneyea r later (Study 3). Inthi s study itwa s found that thequestionnair e ondietar ybarrier sneede d somemodification .Thes ewer e made (seeAppendi x 3)an d this revisedquestionnair ewa sapplie d ina large population of 571 insulin-treated and 218no n insulin-treated diabetic patients (Study 4). The samequestionnair e wasuse d toasses sbarrie r prevalence amongdiabetic s treatedwit hContinuou s Subcutaneous Insulin Infusion (CSII)i nstud y 5.Onl yon e itemo fthi squestionnair e had tob e deleted fromth eanalysi sbecaus e ofa translationerror .

The studyo fway so fcopin gwit hdietar ybarrier swa s startedb ymakin g an inventory ofal lpossibl eway s of copingwit h themamon ga grou po f 104 insulin-treated diabeticpatient s (Study 2). Based on this study itwa s considered that thewa ydiabeti cpatient scop ewit hdietar ybarrier s differs fordifferen tdietar ybarriers .Therefore ,i nth e first stepo f Study 3a n inventorywa smad eo fpossibl eway s tocop ewit h sixdietar ybarrier s among 72 recentlydiagnose d diabeticpatients .Thi s inventorywa suse d toconstruc t a questionnaire onth eway so f copingwit h six specific dietarybarrier s (see appendix 4). Thisquestionnair e wasuse d to study theway s tocop ewit h these sixbarrier s inth e second stepo fStud y 3amon g7 2 insulin-treated diabetic patients. InStud y 4th eway so f copingwit h fourdietar ybarrier swer e determined among 571 insulin-treated and 218no n insulin-treateddiabetics , using the samequestionnair e asuse d instud y 3 (Appendix5) . -81-

Questionnaireswer e constructed based on the resultso f qualitative inventories among relatively largepopulation s ofdiabeti c patients.Thi s procedure has limited the risk ofdisregardin g important barriers orway s of copingwit h them.Th equestionnaire s can therefore be considered to reflect a full rangeo f possible dietarybarrier s andway s of copingwit h six of these dietary barriers.

8.1.2. Study populations Most of the insulin-treated respondentswer e recruited via theDutc h Diabetes Association (DDA).Onl y inStud y 4,3 1additiona l insulin-treated diabetics were recruited viadieticians . TheDD Aha s themos t complete database ofinsulin-treate d diabetics in the Netherlands.However ,som e caution is requiredwit h regard togeneralizin g the conclusions toal l insulin-treated diabetic patients inth eNetherlands .Onl y one third of all insulin-treated diabetics isa DDA-member .Diabetic swh o had their diabetesdiagnose d in recentyear sar ebette r represented inDDA' s database,sinc emos t newlydiagnose d diabetics areadvise d to jointh e DDA. After a fewyea r an increasing percentage of them cancels their membership. DDA-members are found tob e better informed andmor e interested in their disease thanno nDD Amember s (2).Thi sma yhav e influenced barrier prevalence intw oways . Theymigh t have reported more barriers because of their greater interest inth edisease ,an d subsequent higher awareness of their limitations. On theothe r hand theyma y alsohav e succeeded incopin gmor e effectively with their dietary barriers, resulting ina lowe r prevalence of thesebarriers . Non insulin-treated respondentswer e recruited through theDDA ,b y an advertisement campaign inloca l newspapers and throughdieticians . The CSII-treated respondentswer e a random sample drawn from a self-selected populationwit h CSII-treatmenta t aUniversit y clinic inDüsseldorf , FRG. In thequalitativ e inventories (Study 1+2) respondents included both sexes, varied inag ean dduratio n ofdiabete s topreven t bias inbarrier s andway s of coping thatmigh thav e come froma selected population. The first study toquantif y barrier-prevalence (Study 3)wa sdon e among recentlydiagnose d insulin-treated diabetics.Recentl y diagnosed diabetics were selected because for them the contrast between notbein g advised a diet and the advised diabetic dietwoul d bemos t clear. Subsequently a studywa sdon e among a cross-section of insulin-treated and non insulin-treated diabeticswit h both sexes,varyin g inag e andduratio n of diabetes. This assorted population was selected tob e able togeneraliz e the -82-

resultso fou rstud ya smuc ha spossibl ewithi nth econstraint sdiscusse d earlier.Lastl ydiabetic swit ha liberalize ddie twer estudied .Thes e respondentswer eselecte dt ob eabl et otes twhethe rdiet-liberalizatio ncoul d bea possibl estrateg yi npreventin gdietar ybarriers .

8.1.3.Assessin gbarrier-prevalenc e Inchapte rtwo ,th erevie wo fliterature ,w ediscusse dth estudie so fAr ye t al. (3)an dGlasgo we tal . (4).Ar ye tal . (3)reporte dtha teatin gou ti n restaurantsan dfoo doffer sfro mother swer eth emajo rreason sfo rdietar y non-compliance.The ybase dthi sconclusio no nth erespons eo f20 8diabetic so n openende dquestions .Glasgo we tal . (4)administere da questionnair ewit h4 itemso ndietar ybarrier swit hprecede drespons ecategorie samon g6 5 diabetics.The yfoun dth emos tprevalen tdietar ybarrier st ob ethos etha t dealwit hth edifficult yt oea tth eprope r amountso ffoo dan dstil lfeelin ghungr ywhil eno tbein gallowe dt oea t anymore.Socia lbarrier scam elast .I nchapte rtw ow ehav eattribute dthes e differentresult st oa differen tmethodology :a nope nende dquestionnair e versusquestion swit hprecede dresponse-categories . Inou rstud yw eemploye dbot hmethods .T oidentif ypossibl edietar ybarrier s weuse dope nende dquestion si nStud y1 .I nanalog ywit hAr ye tal . (3)w e couldhav einterprete dth erespons eo nthes equestion si nterm so fprevalence . Theresult swoul dhav esuggeste dbarrier sdu et orestriction si nfoo dus et o bemos tprevalent ,followe db ysocia lbarriers .Barrier swit hphysica l discomfortwoul db eles sprevalent .Ou rresult so nbarrier-prevalenc ei n studiesusin gprecede d response-categories (Study3+4 )lea du st odifferen t conclusions.Thes estudie ssho wtha tbarrier swit hphysica ldiscomfor tar e mostprevalen twhil esocia lbarrier sar eles sprevalent . Inou ropinio nconclusion sabou tth eprevalenc eo fdietar ybarrier sar ebes t drawno nth eresult so fstudie s3 an d4 .Th emetho duse di nthes estudie s allowsfo rmor econtro love rth egeneratio no fth einformatio nan dallow sa morereliabl ecompariso no fth eresult sbetwee nrespondent s (5).Furthermor e theus eo fa four-poin tscal ei nstud y4 allowe dfo rmor esophisticate d statisticalanalysis . -83-

8.2.Managin gdietar ybarrier s

8.2.1.Genera l Thebarrier stha tmak eth edie ta difficul taspec to fth ediabeti cregime nan d theirprevalence ,th eway st ocop ewit hdifferen tdietar ybarriers ,an dth e influenceo fduratio no fdiabete san ddifferen tdiabeti ctreatment so ndietar y barriershav ebee nassesse di nthi sstudy .Th eresult swil lb ediscusse di n thisparagraph .

8.2.2.Wha ti sa dietar ybarrie r Inchapte rtw ow eshowe dtha tdietar ybarrier swer econsidere drelevan tt ob e studiedbecaus ethes ema yhinde rdietar ycompliance .W econsidere dtha ta dietarybarrie rencroache supo na person' swell-bein gregardles so fit simpac t oncompliance .Therefor ei twa sdecide dt ostud ydietar ybarrier swhethe ro r notthe ylea dt odietar ynon-compliance .A sa consequenc ea dietar ybarrie r wasdefine da sa hinderanc et oa person' swell-being ,induce db ybein gadvise d adiet .

Analysiso fth edifferen tdietar ybarrier stha twer eidentifie dshow stw o differentelement stha tcharacteriz ea dietar ybarrier .Th efirs telemen ti sa hindrancetha ti scause db ybein gadvise da diet .Suc hhindrance sare : Restrictionsi nfood st ochoos efrom ,th erequire dregularit yi nth e eating-pattern,restriction si nquantitie st oea tan dhindrance scause db y otherpeople .Th esecon delemen tcontain saspect so fa person' swell-bein g thatar ea tstak ebecaus eo fthes ehindrances .Thes easpect sare :physica l well-being,well-bein gassociate dwit henjoyin gfood ,well-bein gassociate d withfeelin gsur etha ton eeat sth erigh tamoun to ffoods ,well-bein g associatedwit hspendin gmone yo ngood sothe rtha no nfoo drequire db yth e dietan dsocia lwell-being .I nparagrap h8.2.3 .t o8.2.6 .th eimpac to fth e dieto nthes edifferen taspect so fa person' swell-bein gwil lb ediscussed .

8.2.3.Physica ldiscomfor t Theprevalenc eo fbarrier sexpressin gphysica ldiscomfor ti samon gth ehighes t asassesse di nth eStudie s4 an d5 .Thi swa sa nunexpecte dobservation .Th e justificationt oas kdiabeti cpatient st okee pthei rdie tlie si nth eassume d physicalbenefit stha tca nb eobtaine dfro mkeepin gth ediet .Fro mou rresult s thevalidit yo fthi sjustificatio ni st ob equestioned . -84-

Themajo r explanation for theprevalenc e ofbarrier sexpressin g physical discomfort isa caloricdefine ddie twit h settime s toeat ,tha twa s advised tomos to f the insulin-treated diabeticpatient s inthi s study.Suc ha diet doesno tallo w forvariabilit y indail y lifeno r forth eda y toda y variability inenergy-intak e thatha sbee n foundamon g insulin-treated diabetics (6-8). We have showntha t for thebarrier : 'Feelinghungr ywhil eno tallowe d toeat ' themos t frequentlyuse dwa y tocop ewit h thisbarrie rwa s toea t carbohydrate-free foods,includin g fatty foods.Smokin g respondents tended to lighta cigarettewhe n feelinghungry .Thes eway so fcopin gar e clear attempts tocompl y toth eprescribe d dieto fn oadditiona l eatingan d certainlyn o additional carbohydrate-intake.Thes eway so fcopin gca nlea d toa n increased fat intake,o r consolidate a smokinghabi tamon gdiabeti cpatients .

A diet leading to feelingso fphysica ldiscomfor twherea s iti smean t to contribute toa person' swell-bein g isa paradox .Eve nmore ,attempt s to complywit h sucha die ttha tprov eno tt ocontribut e toa person' shealt h perspective add tothi sparadox .Thi sparado x iscause db y caloricdefine d diets, thatar e inadequate.Th edesirabilit y ofadvisin g suchdiet s is therefore tob equestioned .

8.2.4.Restriction s infood st ochoos e from Barriersexpressin g restrictions in foodst ochoos e fromwer e found tob e among thosewit h thehighes tprevalence .Thes ebarrier s restrict the possibility fordiabetic s toenjo y their food.Thes ebarrier sals oca nb e a cause fordietar ynon-compliance .I twa s found that thesebarrier shav e an intermediate rateo fnon-compliance .Furthermore ,i twa s found thatdiabeti c patients tend to reduce thenumbe r of foods theyea t shortlyafte r the diagnosiso f theirdiabete s(1) .

Thebarrier s 'Wanting foodsexclude db y thediet' , 'Finding itdifficul t to stayawa y from sweets', 'Having toea t lean foods'an d 'Othersea t foodsI can'teat 'demonstrat e thatman ydiabeti c patients consider theirdie t to consisto f forbidden foodso r foods that should beeaten .Fo rdiabetic s there aren o forbidden foods.Therefore ,thi sperceptio no f thedie t ist ob e a matter of concern fordietar yeducators . -85-

Onemor ebarrie rha st ob ementione dunde rthi sheading :'No tknowin gho wmuc h toea to fa certai nfood' .Apar tfro mfeelin grestricte di nth eus eo fcertai n foods,on efift ht oon ethir do fth ediabeti cpatient shav edoubt sabou tho w muchthe yca nea to fa particula rfoo dan dfin dthi sa barrier .

8.2.5.Th efinancia lcost so fth edie t Thebarrie rexpressin gtha tdiabeti cpatient sfee ltha tthe yhav et ospen d muchmone yo nfoo dbecaus eo fthei rdie twa sfoun dt ohav ea prevalenc eo f41 % amonginsulin-treate ddiabetic san d32 %amon gno ninsulin-treate ddiabetics . Fromth ediabeti cpatient' spoin to fvie wthei rdie ti smor etha njus ta ordinaryhealth ydiet .Fo rthe mth eadvise ddie trequire sextr amoney .Thi s canb eunderstoo dwhe nconsiderin gtha trecentl ydiagnose ddiabeti cpatient s exchangechea phig hfa tfood sfo rmor eexpensiv elea nfood san dtha tthe yten d toea tdiabeti cspecialt yfood stha tar emor eexpensiv etha nthei rcommo n alternative(1) .

8.2.6.Socia lbarrier s Socialbarrier swer efoun dt ohav ea relativel ylo wprevalence ,rangin gfro m 7%t o30% .Socia lbarrier swer eleas tofte ncope dwit hb ydietar y non-compliance.Thes efinding scoul dlea dt oth econclusio ntha tsocia l barriers,an dwit hthes eth esocia lfunctio no ffoo dar eno treall yt ob e botheredabou twhe ngivin gdietar yadvice .Suc ha conclusio nwoul db e premature.Th ebarrier swit hphysica ldiscomfor tar emos tfelt .On eca nassum e thatsocia lbarrier swil lcom eu pa smajo rbarrier swhe nth ebarrier s expressingphysica ldiscomfor tar eeffectivel yresolved .O nth eothe rhan d whenadvise ddiet sallo wfo rmor eflexibilit yi nmeal-time san dwhe nth e exclusiono ffood si sno tfel ta sbein gessentia lt oth ediet ,th eabsolut e prevalenceo fsocia lbarrier si sals olikel yt odecrease ,becaus esevera lo f thesocia lbarrier sar ecause db yfixe dmeal-time san dconsiderin gfood st ob e forbidden.

8.2.7.Th eeffec to fduratio no fdiabete san ddifferen tdiet so ndietar y barriers Instud y3 n oeffec to fduratio no fdiabete so nbarrie rprevalenc ewa sfound . Initiallyi twa sassume dtha trecentl ydiagnose ddiabeti cpatient swoul d experiencea grea tnumbe ro fdietar ybarriers ,wherea safte rhavin gdiabete s foron eyea rth eprevalenc eo fbarrier swoul dhav ebee ndecrease ddu et oth e increaseo fknowledg ean ddail yexperience swit hth ediet .Thes eassumption s -86-

proved tob ewrong . Itwa s concluded that thedietar ybarrier s thatwer e studied areno teasil y solved bydiabeti c patientsthemselves . The inventoryo fdietar ybarrier s (Study 1)i sbase d on the response of diabeticpatient swit h awid e rangeo fduratio no fdiabetes .Barrier s that couldhav ebee n resolvedwithi na yea r ofhavin gdiabete swer e therefore likely tog ounnoticed .Therefor e thedietar ybarrier s inthi sstud yar e those barriers thatar eno teasil y solvedb ydiabeti cpatient s themselveswithi n one year.Thes ebarrier s seemt ob e inherent toth eadvise ddiet .Difference s in experienced barriers are tob eexpecte dwit hdifferen t adviseddiets .

Itwa s subsequently studiedwhethe r insulin-treated orno n insulin-treated diabeticpatient sexperience d differentdietar ybarrier s (Study 4).I n this studyn ogrea tdifferenc ewa s found inbarrie r prevalence.Onl y for barriers incategorie s thatwer e lowi nprevalenc e forbot hpopulation swer e differences found.Thi slac k ofdifferenc ewa spuzzling .Th e rationale behind thedie t for insulin-treated and ano n insulin-treated diabetic patients is different (9-11). Sincew e studied thosebarrier s thatwer edu e toa diet ,th e lack ofdifferin gbarrie rprevalence ,ca n imply that theadvise ddiet swer e not sodifferen tafte r all.Fro mthi s study itca nno tb e concludedwhethe r thissuggestio n istru eo rnot .Bu t if so,i twoul d point toa lack of tailoring thedie t toth e requirementso f thedisease ,thu scausin g unnecessary dietarybarrier sbecaus eo funnecessar y restrictions.

Totes twhethe r adifferen tdie twoul dmak ean ydifferenc e inbarrie r prevalencew e selected a studypopulatio nwh ower eknow n tob eadvise d ona differentdiet .I nStud y 5i twa s testedwhethe r CSll-treateddiabeti c patientswit h a liberalized dietwoul d experience lessdietar ybarrier s than diabetic patientswit h conventional insulin therapy.Agai na differenc e in barrier prevalencewa sexpected ,especiall y since theCSII-populatio nwer e known tob eexplicitl y taughta mor e liberalized diet.CSII-diabetic swer e found toexperienc e lessdietar ybarriers .Difference s in barrier-prevalence couldb e attributed toth egreate r mealtime flexibility that is characteristic ofCSII-treatmen twit h aliberalize d diet (12,13). Itca nb e concluded that barriers thatar e causedb ydiet s thatd ono t allowfo rvariabilit y indail y lifeno r for theda y toda yvariabilit y inenergy-intak e canb eprevente d by creating greater mealtime flexibility. -87-

8.2.8.Way so fcopin gwit hdietar ybarrier s Thewa yt ocop ewit hdifferen tdietar ybarrier sha sals obee nstudie di nthi s thesis.I nbot hStudie s3 an d4 a ninvers erelationshi pwa sfoun dbetwee n barrierprevalenc ean dprevalenc eo fcomplian tway so fcoping .Highl y prevalentdietar ybarrier sar emajo rhindrance st oth equalit yo flif eo f diabeticpatients .Highl yprevalen tbarrier sals oar emos tofte ncope dwit hb y dietarynon-compliance .Thos edietar yrestriction stha tmak ebarrier shighl y prevalentals oar emos tdifficul tt ob eadhere dto .Aimin ga treducin gdietar y barrierstherefor ei sa fruitfu lstrateg yt obot hmak eth edie tmor e pleasurablet oliv ewit han dt omak eth edie tmor elikel yt ob eadhere dto .

8.3.Preventin gdiabetics 'dietar ybarrier s

8.3.1.Genera l Dietarybarrier sar ehindrance st oa diabetic' swell-being .Th eissu eo fho w topreven tthes ebarrier stherefor ei swort hconsidering .Preventin gdietar y barrierswil lcontribut et oth equalit yo flif eo fdiabeti cpatient san dt o dietstha tar emor elikel yt ob eadhere dto .I nthi sparagrap h (8.3)th efocu s iso ndietar yeducation .Th eai mo fdietar yeducatio nshoul db et oadvis e dietstha tcontribut et oa person' swell-being .I nthi sparagrap hsuggestion s aremad eo nho wt opreven tdietar ybarrier san dthereb yt ocontribut et oa diabetic'swell-being .

8.3.2.Advisin gdiet stha td ono tcaus eunnecessar ydietar ybarrier s InStud y5 ,CSII-treate ddiabeti cpatient swit ha liberalize ddie twer efoun d toexperienc eles sdietar ybarrier scompare dt odiabeti cpatient swit h conventional insulintherapy .Thi sfindin gdemonstrate dtha tdietar ybarrier s canb eprevente db yadvisin gdiet stha tcontai nles srestrictions .I nStud y3 thelac ko fdifference si nprevalenc eo fbarrier samon grecentl ydiagnose d diabeticspatient scompare dt oafte ra follow-u pperio do fon eyear , demonstratedtha ti ti shar dfo rdiabeti cpatient st oovercom eth edietar y barrierscause db ya give ndiet .

Studieshav eshow ntha tno ncalori cdefine ddiet sar eno tdetrimenta lt o diabeticcontro lfo rlea ndiabetic s (14-17).Sinc ecalori cdefine ddiet swit h settime st oea tgiv eris et ohighl yprevalen tdietar ybarrier stha tar eofte n copedwit hb ydietar ynon-compliance ,th edesirabilit yo fadvisin gcalori c defineddiet sshoul db equestioned . -88-

Furthermore,t opreven tdietar ybarriers ,diet stha tsugges tth eexclusio no f certainfood sshoul dno tb eadvised .Exclusio no ffood sfro mth edie tlead st o highlyprevalen tdietar ybarriers .Whe nconfronte dwit hthes ebarrier sth e dietdoe sno thav ea bi gchanc eo fadherence .

8.3.3.Foo dexchang elist s Foodexchang elist shav ebee ndevelope da sa nalternativ efo rlist swit hfood s thatshoul db eeate nan dfood stha tshoul dno tb eeate n (18).Exchang elist s aremean tt oenabl ediabeti cpatient st oea ta variet yo ffood swhil eeatin g ina health ywa y (19).Mos tinsulin-treate ddiabetic sar eprovide dwit ha n exchangelist .Th ehig hprevalenc eo fbarrier stha tdemonstrat ediabeti c patientst oconside rthei radvise ddie tt oconsis to ffood stha tshoul do r shouldno tb eeaten ,question sth eeffectivit yo fthes eexchang elists .Way s toimprov eth eeffectivit yo fexchang elist st oreduc ebarrie rprevalenc e shouldb econsidered .

Theprinciple so fa foo dexchang elis tan dth eadvise ddie tar estrongl y related.I nou rstudie smos tinsuli ntreate ddiabetic swer eadvise da calori c defineddie twit hse ttime st oeat .A nexchang elis tcoul denabl ediabeti c patientst oadher et osuc ha diet ,whil eeatin ga variet yo ffoods .Constanc y inenergy-intak ei sno ta requiremen tfo rlea ndiabeti cpatients .Therefore , anexchang elis ttha tenable sthe mt oadher et osuc ha die ti sno tneeded . Instead,exchang elist sca nb euse di na teachin gproces st oprovid ediabeti c patientswit hknowledg eo ra sourc eo fknowledg eo fth ecarbohydrate-conten t orenergy-conten to fa food .Wit hthi sknowledg ethe yca nadjus tthei rinsuli n doses (20)t othei renerg yintak ean dphysica lactivit ybase do nregula r blood-glucose readings.Thi srequire sa ne wtyp eo fexchang elists .

Theexchang elis ttha twa sdevelope db yth eDD Acontain sclasse so ffood swit h equalcarbohydrat econtents .Th eclass-widt hi s3. 5gram so fcarbohydrates .I n thiswa ythi sexchange-lis tenable sdiabeti cpatient st odiscriminat ebetwee n foodstha tdiffe rmor etha n3. 5gram so fcarbohydrates .Coefficient so fda yt o dayvariatio no fcarbohydrate-intak ewer ereporte dt orang efro m7 %t o2 4% (8)fo rinsulin-treate ddiabetic so na controlle ddiet ,withou tthi shavin ga noticeableinfluenc eo ndiabeti cregulation .Variatio no f15 %o na mea lof , forinstanc e7 5gram so fcarbohydrates ,woul dimpl ya rang eo f6 4gram st o8 6 gramso fcarbohydrates .This ,realistic ,rang eexceed sth eprecisio no f3. 5 gramsi nth eexchange-list sb ymor etha nsi xtimes .Th eprecisio nsuggeste db y -89-

using theexchange-lis t of theDD Adoe stherefor eno tagre ewit h the reality of thevariabilit y ofenergy-intak e indail ylife . TheCSII-patient so nwhic hw e reportedwer e taughtt oasses scarbohydrate - contentso fa food in1 2gra munit s (=oneslic eo fbread )an d tobalanc e the estimated carbohydrate-contents orenergy-content s ofa mea lwit h their insulin intake.Respondent s fromthi sstud ydemonstrate d satisfactory diabetic control.T oeffectivel y controlblood-glucos evalue sexchang e lists can obviouslyd owit ha greate r class-width.B y increasing theclass-widt huse d in exchange liststh e selectiono fa variet yo f foods islikel y tob emor e easy toperform . Suchexchang e listsma ybes tserv e their aim:providin g the possibilities foroptima l food-variety.

8.3.4.Educatin gdiabeti cpatient st ocop ewit hdietar ybarrier s Another strategy topreven tdietar ybarrier s ist omak e thesebarrier s the subjecto f adietar yconsultation .Togethe rwit h thediabeti cpatien t the dietician candiscus s theoption s tocop ewit ha barrie r that isencountere d topreven t thisbarrie r inth e future (21).I na feasibility-study among 10 dieticians in 50consultation sw ehav e testedwhethe r sucha strategymigh t work.Th equestionnair ewit hdietar ybarrier s asdisplaye d inappendi x 3wa s used toidentif ydietar ybarriers .Accordin g toeigh tou to f teno f the dieticians theus eo f thequestionnair ewit h subsequentlymakin g the reported dietarybarrier s the subjecto fa dietar y consultation, isa feasible strategy.

8.4.Th e influence ofdietar ybarrier so n foodus e

8.4.1.Th e relationshipbetwee ndietar ybarrier san d foodus e Inchapte r 1.5. the studieso fKrond lan d co-workers,Shepher d and co-workers and Tuorilaan d co-workerswer epresente d asprovidin guseful l theories on food choices.Thes eauthor shav e sought toexplai n theus eo fdifferen t foods from learnedmotive s (22-24)o rbelief sabou t these foods (25-30).Al l three groups studied populations inwhic hdietar y changewa sno tespeciall yurged .

Inthi s thesisdiabeti cpatient swer e studied, forwho mdietar y changewa s recommended.Man yo f thebarrier sdiabeti cpatient sexperienc ewit h their diet,hav e incommo n that theyar e related toa specific situation.Fo r instance thebarrie r 'Feelinghungr ywhil eno tallowe d toeat 'i sno t experienced alwayso r everywhere.Th e samegoe s for theothe r barriers inth e -90-

categoryo fphysica ldiscomfort .Als oth esocia lbarrier sar esituatio n specific.Thes ebarrier sar eexperience donl ywhe nwit hothe rpeople .Whe n confrontedwit ha barrie ri na certai nsituatio na diabeti cpatien ti s requiredt od osomething .Whe nfeelin ghungr ybu tno tallowe dt oea tth e optionsare :'no tt oeat' ,'t otak esomethin gwithou tcarbohydrates' ,'t o smokea cigarette 'o r 'totak esomethin gwit hcarbohydrates' .Whe nsomeon e offersa foo dtha ta diabeti cconsider sbes tno tt oea tth eoption sare :'t o refuseth efoo doffered' ,'t oexplai non ei sdiabeti cfollowe db ya refusa lo f thefood 'o r 'toaccep tth efood' .Fo rbot hsituation seithe routcom eha s consequencesfo ra person' sfood-use .

Thestudie so fKrond lan dco-workers ,Shepher dan dco-workers ,Tuoril aan d co-workersprovid ea nexplanatio no fth erespondent' spreferenc efo ra certai n food.Bu twhethe ro rno tsuc ha foo di sconsume di na certai nsituatio nals o dependsupo ncharacteristic so fthi ssituation .Dependin gupo nth eoption s availablei na specifi csituation ,a foo dma yo rma yno tb econsumed .Ou r studytherefor eadd st oth emodel so fKrondl ,Shepher dan dTuoril ath e influenceo fa specifi csituatio no nfoo duse .Thi sinfluenc ei sespeciall y relevantwhe nstudyin gchange si nfoo dus einfluence db ya nadvise ddiet , becausesuc ha nadvise ddie ti slikel yt ocaus edietar ybarriers .Thos e barrierswil lsubsequentl yinfluenc efoo duse ,a se.g .show ni nth ewa yo f copingwhe nfeelin ghungr yb yeatin gfatt yfoods .

8.5.Nutritio neducatio n Thisstud ywa sstarte dt oidentif yth econstraint sdiabeti cpatient s experiencewhe ntryin gt ochang ethei rdie taccordin gt oa nadvise ddiet .I t washope dtha tstudyin gthes econstraint swoul dyiel dsom ealternativ e approachesfo rdietar yeducatio no fth egenera lpublic .

Dietaryeducatio no fth egenera lpubli cimplie sa nadvic et ochang edietar y intake.Th ediabeti cdie tdiffer sfro mth eadvic egive nt oth egenera lpublic . Mostdiabeti cpatient si nthi sstud ywer erequire dt oea ta tse ttime san d consumese tamounts .Man yo fthe mconsidere dtha tthe ywer esuppose dno tt o eatsugar .Bu tcomparabl et oth egenera lpopulation ,diabeti cpatient sar e advisedt oea ta health ydiet ,wit hspecia lattentio nt oa reductio no f (saturated)fat-consumption . Thedegre et owhic hth egenera lpubli ci slikel yt ochang ethei rfood-us ei s differentfro mth edegre et owhic hdiabeti cpatient sar elikel yt ochang e -91-

their food-use.Th egenera lpubli cwil lmos tlikel ymak e lesseffort s to change theirdie t since theylac ka n immediate feed-back likea change in blood-glucose values,no rd othe yhav e theclos econtact swit h professional workers (physicians,dieticians )wh o stressth e importance ofa health ydiet . Inspreadin g themessag e ofa health ydie tt oth egenera l public the government takesa restrictive position topreven t themselves fromminglin g toomuc hwit h thepersona l affairso fpeopl e (31).Withi n theboundarie s of this restrictivepositio n some suggestionsar emade ,tha tcoul d improve the effectivityo fnutritio neducation .

Providingphysiologica l feed-back When tryingt ochang e theirdiet ,th egenera lpubli cwil l experience dietary barriers.Th epossibl e positive feedbac k fromfo r instance thedecrease d risk toa hear tattack ,b ya decrease d ormodifie d fat-intake,i sno t immediately felt.However ,negativ e feed-back isfel timmediately :th eextr a costs involved inbuyin g low-fatproduct so r theexclusio no f certainwell-like d foods.Thi spredominantl y negative feed-back makes ithar d for thegenera l public tochang e theirdiet .I ti stherefor eadvisabl e todevelo pway s in which a short-term feed-back loopca nb e created. Inhig h riskgroup sa regular check-upo f cholesterol-levelsma y serve asa feed-back onth e effect of a change in (saturated)fa tconsumption .

Providingbehaviora l feed-back Closely related toth elac k ofpositiv ephysiologica l feed-back are the difficulties inevaluatin gwhethe r onedoe so rdoe sno tea t ina health yway . When physiological feed-back isno tpossibl e it isimportan t toenabl epeopl e toevaluat ewha t theyar e eating: isi thealth yo rnot ?Whe n they find out their eating habits tob ehealthy , itma y servea sa positiv e feedbac k to consolidate thedietar ychange . Theguideline s fora health ydie ta sdraw nu pb y theNutritio n Council (30) canno talway s clearlyb eevaluated .Thi sapplie sespeciall y toth eadvic e on eating avariet yo f foods.N oon e reallyknow swha t 'avariet yo ffoods ' means. Fromothe r guidelines targetstha tar e relevant fora n individual can be formulated, like theguidelin e to reducedietar y fatt obetwee n 30%an d35 % of totaldail yenergy-intake .I ti sadvisabl e tosubsequentl y developway s in which the generalpubli c candetermin ewhethe r theyar eo n the right track with theirdietar ychange .The yshoul db eenable d tomonito ra change in dietary intake,an devaluat e thechang e indietar y intake against oneo f the -92-

guidelines fora health ydiet . Up tono w such instruments toself-monito r changes indietar y intakear eno t available.Developmen t of such instrumentsar e therefore needed.

Set priorities Wehav edemonstrate d thatth emor e restrictionsa die t contains,th emor e dietarybarrier sar e tob eexpected .Th emor ebarrier s theles sth e chance that the really importantguideline sar e followed.Th eNutritio n Council made a listo f sixdietar yguideline s forth egenera l population (32).I twoul d be advisable toselec ton e item fromthi slis ta smos t relevant for an education-campaign for thegenera lpublic .

The respective barriersw e identified inou r studyar eal l related toth e diabeticdiet .No tal lo f the identified barriersar eo f relevance todietar y education for thegenera lpublic ,bu t someare ,lik e the financial costso fa dietary changean dbarrier s caused byperceivin g thedie ta sconsistin g of forbiddenfoods .

Thecost so f thedie t Manydiabeti c respondents inou r study reported thatthe ydi d spendmor emone y on theirdiet .A n important causeo fth e increased costslie s inth e relative extra costso f low-fat-varietieso f foods.Th e costso f these foodsma y also be abarrie r todietar y change for thegenera l public.I t isadvisabl e to include suggestions for low-costlow-fa tfood s indietar yeducation .

Forbidden foods Manydiabetic s reported that theyconsidere d certain foods tob e forbidden. Niewind (1)showe d that thevariet yo f foodsuse db y recentlydiagnose d diabetic patientswa sdecrease d compared toth eperio d before their diabetes wasdiagnosed . Theperceptio n ofa die ta sconsistin g ofprohibite d foods is notnutritionall y sound: innutritiona l theoryn o foodsar eba d inthemselves . The ideatha tcertai n foodsar eprohibite d leadst oth eexclusio n of foods fromth ediet .Th eexclusio no f foods from thedie t isa barrie r forman y diabeticpatients ,ofte n leading todietar ynon-compliance .T opreven t such barriers it isstrongl yadvise d to recommend favorable foodso r favorable ways ofpreparin g foods,rathe r thanadvisin g people toexclud e certain 'bad' foods fromthei rdiets . -93-

References

1.Niewin dAC .Diabete san ddiet :foo dchoices .Ph DThesis ,Agricultura l UniversityWageningen ,1989 . 2.Visse rAPh ,Boogaar dPR Fva nde ,Vee nE Ava nder .Participati eva n diabeten.Medisc hContac t1985;48:1502-1504 . 3.Ar yDV ,Toober tD ,Wilso nW ,Glasgo wRE .Patien tperspectiv eo nfactor s contributingt onon-adherenc et odiabete sregimen .Dia bCar e 1986;9:168-172. 4.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 5.Swanbor nPG .Methode nva nsociaal-wetenschappelij k onderzoek.Amsterdam , Boom1984 . 6.Tunbridg eR ,Wetheril lJH .Reliabilit yan dcos to fdiabeti cdiets .B rMe d J1970;1:78-80 . 7.Christense nNK ,Terr yRD ,Wyat tS ,Picher tJW ,Loren zRA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Diabete sCar e1983;6:245-250 . 8.Henr yCL ,Heato nKW ,Manhir eA ,Harto gM .Die tan dth ediabetic :th e fallacyo fa controlle dcarbohydrat eintake .J Hu mNut r1981;35:102-105 . 9.Hanse nBC .Dietar yconsideration sfo robes ediabeti csubjects .Dia bCar e 1988;11:183-188. 10.Wheele rML ,Delahant yL ,Wylie-Roset tJ .Die tan dexercis ei nno n insulin-dependentdiabete smellitus :Implication sfo rdietitian sfro mth e NIHConsensu sdevelopmen tconference .J A mDie tAsso c1987;87:480-485 . 11.Skyle rJS .Dietar ymanagemen to fdiabete smellitus .In :Peterso nCM .(ed) . Diabetesmanagemen ti nth e80' s:Th erol eo fhom ebloo dglucos emonitorin g andne winsuli ndeliver ysystems .Praege rScientific ,Philadelphia , 1982:126-151. 12.Cappe rAN ,Heade nSW ,Bergensta lRM .Dietar ypractice so fperson swit h diabetesdurin ginsuli npum ptherapy .J A mDie tAsso c1985;85:445-449 . 13.Lewi sKS ,Bradle yC ,Knigh tG ,Boulto nAJM ,War dJD .A measur eo f treatmentsatisfactio ndesigne dspeciall yfo rpeopl ewit h insulin-dependentdiabetes .Diabeti cMedicine ,1988 ;5 :235-242 . 14.Chantela uEA ,Frenze nA ,Gösinge rG ,Hanse nI ,Berge rM .Intensiv einsuli n therapyjustifie ssimplificatio no fth ediabete sdiet ,a prospectiv estud y ininsulin-dependen tdiabeti cpatients .A mJ Cli nNut r1987 ;45 :985-962 . 15.Gallaghe rA ,Henderso nw ,Abrair aC .Dietar ypattern san dmetaboli c controli ndiabeti cdiets :a prospectiv estud yo f5 1outpatien tme no n unmeasuredan dexchang ediets .J A mCol lNut r1987;6:525-532 . 16.Gallaghe rAM ,Abrair aC ,Henderso nWG .A four-yearprospectiv etria lo f unmeasureddie ti nlea ndiabeti cadults .Dia bCar e1984;7:557-565 . 17.Abrair aC ,Bartol oM de ,Myscofsk yJW .Compariso no funmeasure dversu s exchangediabeti cdiet si nlea nadults .A mJ Cli nNut r1980;33:1064-1070 . 18.Haa rE ter ,Hillen-Oska mJ .Tes tkoolhydraatvariatielijst .Nederland s Tijdschriftvoo rDiëtiste n1985;40:242-246 . 19.Fran zMJ ,Bar rP ,Holle rH ,Power sMA ,Wheele rML ,Wylie-Roset tJ . Exchangelists:Revise d1986 .J A mDie tAsso c1987;87:28-34 . 20.Nutta lFQ .Die tan dDiabetes ,a brie foverview :persona lperspective .J A m CollNut r1987 ;6 :5-9 . 21.Bartlet tEE .Behaviora ldiagnosis :a practica lapproac ht o patient education.Patien tCounselin gan dHealt hEducatio n1983;1:29-35 . 22.Krond lM ,Colema nP .Socia lan dbiocultura ldeterminant so ffoo d selection.Pro gFoo dan dNut rSe i1986;10:179-203 . 23.Krond lM ,La uD ,Yurki wMA ,Colema nPH .Foo dus ean dperceive dfoo d meaningso fth eelderly .J A mDie tAsso c1982 ;80 :523-529 . -94-

24.Reabur nJA ,Krond lM ,La uD .Socia ldeterminant si nfoo dselection .J A m DietAsso c1979 ;74 :637-641 . 25.Shepher dR ,Farleig hCA .Attitude san dpersonalit yrelate dt osal tintake . Appetite1986 ;7 :343-354 . 26.Shepher dR ,Stockle yL .Fa tconsumptio nan dattitude stoward sfoo dwit ha highfa tcontent .Huma nNutrition :Applie dNutritio n1985;39a:431-442 . 27.Shepher dR ,Farleig hCA .Preferences ,attitude san dpersonalit ya s determinantso fsal tintake .Huma nNutrition :Applie dNutritio n1986;40a : 195-208. 28.Shepher dR ,Stockle yL .Nutritio nknowledge ,attitudes ,an dfa t consumption.J A mDie tAsso c1987 ;87 :615-619 . 29.Tuoril aH .Selectio no fmilk swit hvaryin gfa tcontent san drelate d overallliking ,attitudes ,norm san dintentions .Appetit e1987;8:1-14 . 30.Tuorila-Ollikanine nH ,Lähteenmäk iL ,Solovaar aH .Attitudes ,norms , intentionsan dhedoni cresponse si nth eselectio no flo wsal tbrea di na longitudinalchoic eexperiment .Appetit e1986;7:127-139 . 31.Ministeri eva nWelzijn ,Volksgezondhei de nCultuur .Not aVoedingsbeleid . 's-Gravenhage,1984-1987 . 32.Voedingsraad .Richtlijne ngoed evoeding .Voedin g1986;47:159-180 . -95-

APPENDIX I:Overvie wo f thedifferen t studies

Study 1Inventor yo fdietar ybarrier s (Niewind chapter 3,chapte r 3) Aim Inventoryo fbarrier s insulin-treated andno n insulin-treated diabeticpatient sexperienc ewit h their diet Study10 4 insulin-treated diabetics+ 58no n insulin-treated population Populationdiabetics .Variatio n inag ean dduratio no fdiabetes ,wit hbot h sexes Method Qualitative inventory

Study 2 Inventoryo fway so fcopin g (chapter 4) Aim Inventoryo fway so fcopin gwit hdietar ybarrier sexperience d by insulin-treated diabetic patients Study 104 insulin-treated diabetics.Variatio n inag ean d duration Population ofdiabetes ,wit hbot h sexes MethodQualitativ e inventory

Study 3Prevalenc e ofBarrier san dWay so fCopin gamon g recently diagnosed diabetics (chapter 5) Aim -barrie r prevalence among recentlydiagnose d diabetics - change inbarrie r prevalence after follow-upo fon eyea r - prevalence ofway so f copingwit hdifferen tdietar y barriers Study7 2 recentlydiagnose d insulin-treated diabetics.Ag e between Population 20-40years ,initia lduratio no fdiabete s6 month so naverage ,wit h both sexes Method Two steps:recentl yafte rdiagnosi so fdiabete san don eyea r later.A tbot h steps:Questionnair e ondietar ybarrier sbase d on Study 1.A t first step:Qualitativ e inventoryo fway so f coping with sixdietar ybarriers .A t second step:Questionnair e onway s of copingwit h sixdietar ybarrier sbase d onth e qualitative inventory inth e firststep .

Study 4Prevalenc eo fBarrier san dWay so fCopin gamon ginsulin-treate d andno ninsulin-treate ddiabetic s (chapter 6) Aim -barrie r prevalence among insulin-treated andno n insulin-treated diabetics - prevalence ofway so f copingwit hdifferen tdietar y barriers among insulin-treated andno n insulin-treated diabetics Study 571 insulin-treated + 218no n insulin-treated diabetics Populationpopulation .Variatio n inag ean dduratio no fdiabetes ,wit h both sexes MethodQuestionnair e ondietar ybarriers ,adapte d fromStud y3 Questionnaire onway so f copingwit h fourdietar ybarriers , adapted fromStud y3

Study 5Barrie rprevalenc e amongCSI Itreate ddiabetic swit ha liberalized diet (chapter 7) Aim Compare barrier prevalence amongdiabetic swit h Continuous Subcutaneous Insulin Infusion (CSII)an da liberalized dietwit h barrier prevalence amongdiabetic swit h conventional insulin therapy Study 43CSI I treateddiabetic s+ pai rmatche ddiabeti c population Population groupwit h conventional insulin therapy.Variatio n inag e and durationo fdiabetes ,wit hbot h sexes Method Questionnaire ondietar ybarrier sa s inStud y 4 -96-

Erzij nmense nme tdiabete sdi evinde nda the thebbe nva nee ndiabetesdiee twe leen svervelen dis .Hieronde r

staanenkel euitsprake nva nmense nme tdiabete sove rwa tvervelen dka nzij naa nhe thebbe nva nee ndieetadvie :

Wilt uva n iedereuitspraa kaangeve n - ofdi tafgelope nmaan dee nproblee mvoo ru was ? - alshe tee nproblee mwas ,ho evaa kdi tproblee mvoorkwa m - alshe tee nproblee mwas , hoemoeilij ku hetvon do mme tdi tproblee mo m tegaan .

Wasdi tee n Hoevaa kkwa mdi tvoor ? Hoehinderlij kvon du di tprobleem ? probleem?

nee/ja —> dage- weke­ 1 xdez e heel hinderlijk niet lijks iijks maand hinde »rlijk hinderlijk 1 2 3 1 L 2 3

1.Mense nbiede nvoedingsmiddele n aan nee/ja —> 1 2 3 L 2 3 die ikmoe tafslaan .

2.Ander emense nvergete n ietst eete n nee/ja —> 1 2 3 L 2 3 voormi j inhui st ehalen .

3.Honge r hebbene nnie tmoge neten . nee/ja —> 1 2 3 L 2 3

4. Ikee tmee rda nvoorgeschreven . nee/ja —> 1 2 3 L 2 3

5. Ikvin dmij nete nsaai . nee/ja —> 1 2 3 L 2 3

6.Ander emense nbemoeie n zichme t nee/ja —> 1 2 3 L 2 3 wat ikeet .

7.Dors t hebben ennie tmoge ndrinke n nee/ja —> 1 2 3 L 2 3

8.Ander emense nhoude ne r slecht nee/ja —> 1 2 3 1 2 3 rekeningme eda t ikee ndiee theb .

9. Ikmoe tvetarm e ofdieetprodukte n nee/ja —> 1 2 3 t 2 3 eten.

10. Inhe tbijzij nva nandere nwa t nee/ja —> 1 2 3 l 2 3 moeteneten .

11.Gee n zin inete nhebbe ne ntoc h nee/ja —> 1 2 3 l 2 3 moeteneten .

12. Ikwee tnie taltij d hoeveel ikva n nee/ja —> 1 2 3 L 2 3 eenbepaal d produktma geten .

13. Het islasti gvoo rander emense n nee/ja —> 1 2 3 L 2 3 dat ikee ndiee theb .

14. Ikvoe lm e niet lekkeral s iknie t nee/ja —> 1 2 3 L 2 3 regelmatigeet .

15. Ikma gweini g etenva n sommige nee/ja —> 1 2 3 L 2 3 voedingsmiddelen.

16.Andere nhoude nslech t rekeningme t nee/ja —> 1 2 3 i 2 3 de tijdstippenwaaro p ikmoe teten .

17. Ikka nnie tme tandere nmeeeten . nee/ja —> 1 2 3 1 2 3

18.Alle s looptwa tander sda nverwach t nee/ja —> 1 2 3 1 2 3 daardoor ishe tmoeilij k hetdiee t tevolgen .

19. Ikvoe lm eee nuitzonderin gdoo rhe t nee/ja —> 1 2 3 ] 2 3 dieet.

20.Ander emense nhale n speciaalvoo r nee/ja —> 1 2 3 ] 2 3 mijwa t inhuis .

21. Ikka nmoeilij k van zoetigheid nee/ja —> 1 2 3 ] 2 3 'afblijven.

22. Ik kannie tete nwaa r ik zin inheb . nee/ja —> 1 2 3 1 2 3

23.Vee lmoete n etenva n bepaalde nee/ja —> 1 2 3 1 2 3 Produkten.

24.Regelmati g moeteneten . nee/ja —> 1 2 3 ] 2 3 -97- Erzij nmense nme tdiabete sdi evinde nda the thebbe nva nee ndiabetesdiee twe leen slasti gis . Hierondervolge nee naanta luitsprake nva nmense nme tdiabete sove rwa tlasti gka nzij naa nhe t hebbenva nee ndieetadvies .

Wiltu va nelk euitspraa k aangeveni nhoeverr edi tVOO RU ee nproblee mis .

eengroo t eenproblee m geenprobleem , geenproblee m probleem wellasti g nietlasti g

Ikwi liet sete nwa ti knie tma geten . en en C=J en

Ikvin dmij nete nsaai . en Cn en en

Nietlekke rkunne neten . CZ1 cn cn •

Ikwee tnie thoevee li kva n Cn • CD en eenvoedingsmidde lka neten .

Inhe tbijzij nva nandere niet smoete n cn en en • etenterwij ld eandere nniet seten .

Doorhe tdiee tbe ni kvee lgel dkwij taa n en m en i i mijnvoeding . Anderenete n ietswa t iknie tma geten . en en en en

Hongerhebbe nmaa rnie tmoge neten . • en en en

Ikma gweini gete nva nsommig e en en en en voedingsmiddelen.

Mensenbiede nmi jvoedingsmiddele naa n en • CU die ikmoe tafslaan .

Ikmoe tvetarm eprodukte neten . • en en en Alsi knie t regelmatigeet ,voe li km e en en en en nietlekker .

Ikmoe tvee lete nva nsommig e • o en en voedingsmiddelen. Ikmoe tuitlegge naa nandere nda t ikee n en en en en dieetheb .

Anderenbemoeie nzic hme twa t ikeet . en en en en

Altijd ietst eete nbi jm emoete nhebben . en m en en

Geentre k inete nhebbe ne ntoc hmoete neten . en en en en

Inonverwacht e situatiesi she tmoeilij k en en en en hetdiee t tevolgen .

Anderemense nvergete niet svoo rmi ji nhui s CU en CD tehalen . •

Regelmatigmoete neten . en en en m Moeilijkva nzoetighei da fkunne nblijven . en en en en

Ikkrij ge rlas tva nwannee r ikmee ree t en en en en dani kma geten . -98-

4J G D D D • D D : 8 •D DDD 8 Kl DUG D D D D 8&I 1 a D D D 0) *Ö Q I w > 8 !, l 1-4 m .c D flJ -G -S DDG D D D D Hfl O U) U W U M •H 4-1 -H 0) D DDD J3 at 3 si ai £ ni e j* S ai w 8> T1 D»-H )3 g o Si -H « -U •H B*J *Ö •H « JJ U) —4 0>

ai 4J N 4J *j ai sa II «I

'8. 4J C JlT-t S'g U -H H kJ 5 il

4J D D D D D D D D 3 «0 1 a a D D D D G D D G a 1 D a a s dez e voordoe t îa n ho e v * ta xz •U DD D G D D JSUB H -o u ta D D .rf 4J -H ai G .58:5 8 O X! 01 n n ö ai -u 5 -« ai ai ë 4J > -r-t tP T3 -H

c c a» ai IS1 u» > ta •3-3 4J 3S V 10 1! 4J « I - I g -i

te 4j ai --te a» *

! § ai ai §-8 -99-

Nuvolge nenkel esituatie sdi eu misschie nwe leen sheef theef tmeegemaakt .Ove rdez e situaties stellenw eee naanta lvragen .

Situatie 1.| I kma gweini gete nva nsommig evoedingsmiddele n|

Nuvolge nenkel emaniere nva n reagereno pdez e situatie.Krui svoo r iederemogelijkhei d aanho e vaaku z oreageert .

altijd meestal soms nooit

Ikee tnie tmee rda ni kma gete n \ \ L I l" .' I CU

Ikee tzovee lal si kwi le nee tminde rva nander eprodukten . [ 1 |~'1 ( "1 I—I

Ikee tiet sanders ,waa ri kwe lmee rva nma ghebben . CU l l [—1 [—1

Ikee tdi tvoedingsmidde lhelemaa lnie tmeer . I \ 1 I I 1 I—I

Ikee tzovee lal si kwi le nspui tinsulin ebij . I I 1 J CU I—I

Ikee tzovee lal swaa ri kzi ni nheb . CU I I CZJ CU

Situatie 2.| He tlasti gvinde no nregelmati gt emoete nete n|

Kruisvoo rbeid emogelijkhede naa nho evaa ku z oreageer tal sdez esituati ezic hvoordoet .

altijd meestal soms nooit

Ikee tonregelmatig . I 1 CU tZU T I

ikee tregelmatig . CU • [ZU CU

Situatie 3.| I nhe tbijzij nva nandere niet smoete neten ,terwij ld eandere nnie tete n|

Kruisvoo r iederemogelijkhei d aanho evaa ku z oreageer tal sdez esituati e zichvoordoet .

altijd meestal soms nooit

Ikee tgewoon . CZJ CU CU CU

Ikste lhe tete nuit . CU CU CU CU

Ikvraa gd eandere no mrekenin gt e |'.1 CCI CU I—1 houdenme tmij netenstijden .

Situatie 4. |Honge rhebbe nmaa rnie tmoge nete n|

Kruisvoo r iederemogelijkhei daa nho evaa ku z oreageer tal sdez esituati e zichvoordoet .

altijd meestal soms nooit

Ikee tiet sme tkoolhydraten . CU CU CU CCJ

Ikstee k eensigare top . CU l—I CU I—1

Op zo'nmomen tee ti kniets . CCJ l—1 CU I 1

Ikee tiet szonde rkoolhydraten . I—I CU 1—J CU -100-

SUMMARY

Thisi sa stud yo nth ebarrier stha tdiabeti cpatient sexperienc ewit hthei r diet,an dho wthe ycop ewit hthem .Th edie ti sa difficul taspec to fth e diabetictreatmen t (1-4).Dietar ycomplianc ei sreporte dt ob elo w (5,6).Mor e knowledgeo nth edietar ybarrier stha tdiabeti cpatient sexperienc ema y contributet odiet stha tar eeasie rt ofollo wan dmor epleasurabl et oliv e with.Fo rthi sreaso na stud yo nth edietar ybarrier sexperience db ydiabeti c patientswa sstarted . Diabetesmellitu si sa metaboli cdisease ,wit ha nimpaire dregulatio no fth e bloodglucos elevel .I nTh eNetherland sther ear ea tleas t200.00 0diabetic s (7).Regulatio no fth ebloo dglucos eleve li st ob eachieve db ybalancin g dietaryintake ,physica lactivitie san dpossibl yinsulin-injection so rora l hypoglycemicagents .Mos tinsulin-treate ddiabeti cpatient sar eadvise da caloricdefine ddie twit hse ttime st oeat .No ninsulin-treate ddiabetic swh o areoverweigh tar eadvise dt olos eweight .I ngeneral ,diabetic sar eadvise d toea ta health ydie t (8).A sugarrestrictio ni sa majo rpar to fth ediabeti c diet,bu tfo rsom etim ei tha sbee nknow ntha tsuga rca nb epar to fth e diabeticdie t (8,9).

Chapter2 o fthi sthesi si sa novervie wo fth eliteratur eo nbarrier sdiabeti c patientsexperienc ewit hthei rdiet .N oreliabl einventor yo fdietar ybarrie s wasfound .I twa sconclude dtha tsuc ha ninventor yi sa prerequisit efo ra studyi ndiabetics 'dietar ybarriers .

Chapter3 i sa descriptio no fa ninventor yo fpossibl edietar ybarrier s experiencedb yno ninsulin-treate ddiabeti cpatients .A simila rinventor ywa s madefo rinsulin-treate ddiabetic s (10).Th eresult so fbot hinventorie sar e alike.Bot hsho wa grea tvariet yo fpossibl ebarriers .Becaus eo fth edietar y restrictionsdiabetic sfee lphysicall yunwel lo rthe yregre ttha tthe yca nno t eatfood sthe ylike .Socia lbarrier swer eals oreported .Havin gt oea t regularly,spendin gmuc hmone yo nfoo do rno tknowin gho wmuc ho fa foo dt o eatals oar edietar ybarrier sexperience db ydiabetics .

Inchapte r4 a ninventor yi spresente do fth eway sdiabeti cpatient scop ewit h thebarrier sthe yexperienc ewit hthei rdiet .Complianc ewit hth eadvise ddie t -101-

may imply thata diabeti cwil l goo n feelinghungr yo r feeling supersatiated, thata diabeti cha st olimi t contactswit hothe rpeopl e orno tt oea t certain foods.B yno t complyingwit h thediet ,a diabeti cma yea tpreferre d foods, meetothe r peopleo r savemoney .Als ono ncomplianc ema y imply thata diabetic feelsbetter .A paradox seemst oexis tbetwee neithe r compliance toth e advised dietan d feelingphysicall ywell .

Inchapte r 5a study ispresente d on theprevalenc e ofdifferen tdietar y barriersan d theway s tocop ewit h them.Th e inventoryo ndietar y barriers thatwa smad eearlie rwa suse d toconstruc ta questionnair ewit h precoded response categories.I nthi swa ybarrier-prevalenc e couldb eassessed . This studywa s carriedou tamon g insulin-dependentdiabetic s shortlyafte r diagnosis,age dbetwee n 20an d 40.Physica ldiscomfort ,restriction s in food-use and the required regularityo featin gar e thecategorie so f barriers mostprevalent .Afte r a follow-upperio d ofon eyea rbarrier-prevalenc e was re-assessed.W e had expected barrier-prevalence after oneyea r ofdiabetes to be lower.However ,thi swa sno t thecase .I twa s therefore concluded that dietarybarrier sar eno teasil yovercom eb ydiabeti cpatients .I tals obecam e clear that thosebarrier swit ha hig hprevalenc e aremostl ydeal twit h by non-compliance.

Inchapte r 6a studyo n theprevalenc e ofdietar ybarrier samon g 571 insulin-treated and 218no n insulin-treated diabetics ispresented .Th eway s of copingwit h thesebarrier swer e alsoassessed . Inthi s study itwa s tried to reproduce the findingso fou r first studyo nbarrier-prevalenc e among an assorted diabetic study-population,varyin g inag e andduratio no fdiabetes . Again physicaldiscomfor t and restrictions in foodst ous ewer e found tob e themos tprevalen t categorieso fdietar ybarriers .Onc eagai nbarrier s that were high inprevalenc ewer emos tofte ndeal twit hb ynon-compliance . Itwa s remarkable tonotic e thelac k ofdifference s inbarrier-prevalenc e between the insulin-treated diabeticsan d theno n insulin-treateddiabetics . This finding could implytha tth ediet sa sperceive d bybot hpopulation s are not sodifferen t afterall .

Chapter 7 isa descriptio n ofa study thatwa sdon e tofin dou twhethe r diabetic patientswit h continuous subcutaneous insulin infusionan d a liberalized diet (nocalori cdefine d diet,no t settime st oeat ) (11)woul d experience lessdietar ybarrier swhe ncompare dwit hdiabetic swit h -102-

conventionalinsuli ntherapy .Thi sprove dt ob eth ecase .I twa sconclude d thatliberalizin ga die twil llea dt odiet scausin gles sbarriers .

Chapter8 i sa genera ldiscussio no fth emajo rresult so fthi sstudy .Barrier s expressingphysica ldiscomfor tar eamon gth emos tprevalent .Suc hbarrier s giveris et odietar ynon-complianc ean dar emainl ycause db ydiet swit hse t eating-timesan ddefine dquantitie s (ofcarbohydrates )t oeat .Suc hdiet sd o notallo wfo rth erealit yo fvariabilit yi ndail yenergy-intak e (5,12). It waseve nfoun dtha tdiabetic sconsum efatt yfood swhe nfeelin ghungr ywhil e notallowe dt oeat ,o rsmok ea cigarett ei fthe yar esmokers .Thes ear eno t healthyway so fdealin gwit hsuc ha barrier .Th eparado xo fcomplianc ewit ha n adviseddie tleadin gt ounhealth ybehavior ,an dnon-complianc ebein gmor e healthpromotin gi scause db ya calori cdefine ddie twit hse ttime st oeat . Suchdiet sar eno trealistic .Man ydiabetic sfin dtha tthe yar erestricte di n theus eo fcertai nfoods .The yconside rthei rdie tt oconsis to fforbidde n foodsan dthi slead st oth eexclusio no fcertai nfood sfro mthei rdie t(10) . Thismake sthei rfoo dpatter nmor eboring ,bu tno tnecessaril ymor ehealthy . Fordiabetic sther ear en oforbidde nfoods .Dietar ycounselin gca ncontribut e toa decreas ei nbarrie rprevalenc eb ypreventin gdiabetic sfro mperceivin g theirdie ta sconsistin go ffood sthe yshoul dno teat . Inchapte r8 i ti sconclude dtha tdiet stha tgiv eris et oles sdietar y barrierswil lb emor epleasurabl et oliv ewith ,an dsuc hdiet swil lb eeasie r tocompl ywith .Als osuggestion sar emad et oimprov eth ediabeti c exchange-listt ohav ei toptimall ycontributin gt odietar yvariety .I ti s furthermoresuggeste dt oorganiz ea diabetic' sconsultatio nwit ha dieticia n basedo nth eexperience ddietar ybarriers .Durin gsuc ha consultatio nth e dieticiantogethe rwit hth ediabeti cpatien tca nfin dway st oeffectivel y overcometh ebarrier so fth ediabeti cdiet .Th elas tparagrap ho fchapte r8 containsrecommendation st oimprov enutritio neducatio nt oth egenera lpublic .

References

1.Ar yDV ,Toober tD ,Wilso nW ,Glasgo wRE .Patien tperspectiv eo nfactor s contributingt onon-adherenc et odiabete sregimen .Dia bCar e 1986;9:168-72. 2.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 3.Hous eWC ,Pendleto nL ,Parke rL .Patients 'versu sphysicians 'attribution s ofreason sfo rdiabeti cpatients 'non-complianc ewit hdiet .Dia bCar e 1986;9:434. 4.Jenn yJL .A compariso no ffou rag egroups 'adaptatio nt odiabetes .Ca nJ PublHealt h1984;75:237-44 . -103-

5.Christense nNK ,Terr yRD ,Wyat tS ,Picher tJW ,Loren zFA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Dia bCar e1983;6:245-50 . 6.Glan zK .Nutritio neducatio nfo rris kreductio nan dpatien teducation :a review.Pre vMe d1985;14:721-52 . 7.Pennings-va nde rEerde nL .Probleme ne noplossinge nva nadolescente nme t diabetesmellitus .Utrecht :Rijksuniversitei tUtrecht ,1986 . 8.Hein eRJ ,Schoute nJA .He tdiabetesdieet :nie tander sda nvoedin gvoo r gezondemensen .Ne dTijdsch rGenees k1984;128:524-1528 . 9.Terpstr aJ .Sucros etoegestaa nbi jdiabete smellitus ?Ne dTijdsch rGenees k 1983;49:2255. 10.Niewin dAC .Diabete san ddiet :foo dchoices .Thesis ,Wageninge n AgriculturalUniversity ,1989 . 11.Chantela uE ,Sprau lM ,Mülhause rI ,Gaus eR ,Berge rM .Long-ter msafety , efficacyan dside-effect so fCSI Itreatmen tfo rinsulin-dependen tdiabete s mellitus:a on eente rexperience .Diabetologi a (inpress) . 12.Henr yCL ,Heato nKW ,Manhir eA ,Harto gM .Die tan dth ediabetic :th e fallacyo fa controlle dcarbohydrat eintake .J Hu mNut r1981;35:102-5 . -104-

SAMENVATTING

Indez e studie zijnd emoeilijkhede n onderzochtdi ediabiete nervare nme thu n dieetadviese nd emaniere nva nreagere no pdez emoeilijkheden .He tdieetadvie s isvoo rd emeest ediabete nee nbijzonde r lastigaspek tva nhu nbehandelin g (1-4).Oo kword the tdieetadvie s slechtopgevolg d (5,6). Meer inzichti nd e moeilijkhedendi ediabete nervare nme thu ndieetadvie ska nbijdrage naa n dieetadviezendi eplezierige r zijno mme et eleve ne nmakkelijke r kunnen wordenopgevolgd .Daaro mi sstudi egemaak tva nd emoeilijkhede ndi ediabete n ervarenme thu ndieetadvies . Diabetesmellitu si see nstofwisselingsziekte ,waarbi jd eregulati eva nd e bloedsuikersi sverstoord .I nNederlan d zijnzeke r 200.000diabete n(7) . Regulatieva nd ebloedsuiker s ismogelij k doorhe to pelkaa r afstemmenva nd e voeding,lichamelijk e aktiviteitene neventuel e insuline-injectieso fhe t slikkenva nbloedsuike r verlagende tabletten.Aa nd emeest ediabete ndi e insuline spuitenword t geadviseerdo mregelmati gee nvastgesteld e hoeveelheid teeten .Nie t insuline-spuitendediabete nme tovergewich tword t geadviseerd gewichtt everliezen .All ediabete nword t geadviseerdee n'gezond evoeding ' (8)t egebruiken .Ee nsuikerverbo dwa sjare nonderdee lva nhe tdiabetesdieet . Maar sindsenig e tijdka nsuike ree nonderdee l zijnva nd evoedin gva n diabeten (8,9).

Hoofdstuk 2va ndi tproefschrif t isee noverzich tva nd eliteratuu r overd e moeilijkhedendi ediabete nervare nme the tdieetadvies .E rblijk t geen betrouwbare inventarisatie tezij nva ndez emoeilijkheden .Geconcludeer d wordt datee nbetrouwbar e inventarisatieee neerst e stapmoe t zijnva nee nstudi e naard emoeilijkhede ndi ediabete nervare nme thu ndieet .

Inhoofdstu k 3word t beschrevenwelk emoeilijkhede nnie t insuline-spuitende diabetenme thu ndieetadvie skunne nervaren .Hetzelfd e onderzoek isuitgevoer d onder insuline-spuitende diabeten (10).D eresultate nva ndez e studies verschillenweini gva nelkaar .Beid e studies tonenaa nda td emoeilijkhede n methe tdiabetesdiee t diversva naar dka nzijn .Doo rd ebeperkinge n inhe t dieetadviesvoele ndiabete n zichnie tlekker ,o fz evinde nhe tvervelen dda t zenie tkunne nete nwaa r zezi ni nhebben .Oo ki nhe tcontac tme tander e mensenblijk the tdieetadvie s lastigt ekunne n zijn.Regelmati gmoete neten , veel geld kwijt zijnaa nhe tete no fnie twete nhoevee l jeva nee nbepaal d -105-

voedingsmiddel kuntete n zijnander emoeilijkhede ndi evoorkome nme the t diabetesdieet.

Hoofdstuk 4beva tee noverzich tva nd emaniere nwaaro pdiabete n reagereno pd e moeilijkhedenme the tdieetadvies .He tdiee tvolge nka n inhoudenda t een diabeet lasthoud tva nee nhongergevoel ,va nee ngevoe lva noververzadiging , dathe tkontak tme tander emense nverminder t ofda tbepaald e voedingsmiddelen nietmee r gegetenkunne nworden .Doo rhe tdieetadvie snie to p tevolge n kan eendiabee t zichlichamelijk eprettige rvoelen ,ete nwaa rhi jo f zij zin in heeft,nie t teveelgel daa nhe tete nkwij t zijno fkontakte nme t anderen onderhouden.E r lijktee nparado x tebestaa ntusse nhe tvolge nva nee n dieetadvies en lichamelijkwelbevinden .

Inhoofdstu k 5word tonderzoe k beschrevennaa rd eprevalenti e van verschillende moeilijkhedenme the tdiabetesdieet .Oo k isbestudeer d hoe diabeten reagereno pdez emoeilijkheden .D eeerde r gemaakte inventarisatie van mogelijkemoeilijkhede nme the tdiabetesdiee t isgebruik t omee ngeslote n vragenlijst temaken .Z oko nd eprevalenti eva nd e verschillende dieetmoeilijkhedengekwantificeer dworden .Di tonderzoe k isuitgevoer d onder 72 insuline-spuitendediabete nkor tnada thu ndiabete swa sontdek t tussend e 20e n 40 jaar oud.Lichamelijk e ongemakken,ee nbeperkt evoedselkeuz e end e noodzaak om regelmatig temoete nete nware nd emees tvoorkomend e moeilijkheden.Ee n jaarn ad eeerst emetin gwer dwee rvastgestel d welke moeilijkhedendiabete nervare nme thu ndieet .W ehadde nverwach tda t diabeten na een jaarme tdiabete sminde rmoeilijkhede n zoudenervaren .Di tblee k niet zot ezijn .Hierui twer d gekonkludeerd dathe tvoo rdiabete nnie tmakkelij k is demoeilijkhede nme the tdiabetesdiee t op telossen . Uitdez e studieblee k ook datdiabete no pd evee lvoorkomend e problemen reagerendoo rva nhe t dieetadvies aft ewijken .

Inhoofdstu k 6word t onderzoek beschrevennaa rd eprevalenti e van moeilijkhedenme the tdieetadvie se nd emaniere nva n reagerenhierop . Indi t onderzoek isgeprobeer d de conclusiesva nd evorig e studie te toetsen inee n breed samengestelde onderzoekspopulatie.Di tonderzoe k isuitgevoer d onder 571 insuline-spuitende en 218nie t insuline-spuitende diabeten,variëren d in leeftijd enduu rva nd ediabetes .Oo k nubleke n lichamelijke ongemakken end e beperktevoedselkeuz ed emees tvoorkomend emoeilijkhede nme the tdiee t te zijn enhe tblee k datdiabete no pd evee lvoorkomend e problemen reagerendoo r van -106-

hetdieetadvie s aft ewijken .Opmerkelij k wasda te rgee n grote verschillen waren tussend e tweeonderzocht e populaties ind emoeilijkhede n methe t dieetadvies.Di t zoue r opkunne nwijze nda the tbeel dva nhe tdiee tweini g verschilt tussenbeid epopulaties .

Hoofdstuk 7 isee nbeschrijvin g vanonderzoe k naard evraa g ofdiabete nme t een insuline-pompje enee ngeliberaliseer d dieetadvies (geenvast e etenstijden enhoeveelheden ) (11)minde rmoeilijkhede n ervarenme the tdiee tda n diabeten met een conventionele behandeling.Di tblee k inderdaad hetgeva l te zijn.Ui t ditonderzoe kwer d geconcludeerd dat liberalisering vanee ndieetadvie s leidt totee ndiee tme tminde rmoeilijkheden .

Hoofdstuk 8beva tee nalgemen e discussieva nd e onderzoeksresultaten. Lichamelijke ongemakkenbehore n totd emees tvoorkomend e dieetproblemenvoo r diabeten.Dez eongemakke ngeve nhe tmees taanleidin g omva nhe tdieetadvie s af tewijken .D eoorzaa k vandez eongemakke n ligtvoora l indiëte nme the t advies omo pvast e tijdenvast ehoeveelhede n (koolhydraten) teeten .Dergelijk e diëtengaa nvoorbi jaa nd enormal e dagelijkse variatie in energieopname (5,12).He t iszelf s zoda tdiabete nvetrijk e produktenete nal s zijhonge r hebbenmaa rvolgen she tdieetadvie s nietmoge neten ,o fee n sigaret opsteken als ze roker zijn.Dez emaniere nva n reagerendrage nnie tbi jaa nd e gezondheidva nee ndiabeet .D eparado xdi eontstaa tdoorda the tvolge nva nhe t dieetadviesblijk tt ekunne nleide n totongezon d gedrage nda tafwijke nva n hetdieetadvie s eengezond e keuze kanzij nword tveroorzaak t door een dieetadviesme tvast e eettijden envoorgeschreve n hoeveelheden. Eendergelij k dieetadvies isfysiologisc hgezie nnie t realistisch. Veel diabetenvinde nhe tvervelen d dat zebepaald e produkten niet,o fmaa r in beperktemat emoge ngebruiken .Voo r henbestaa the tdieetadvie sui tee nverbo d ophe tgebrui k vanbepaald evoedingsmiddele nwa terto e leidtda t zijbepaald e voedingsmiddelen nietmee r eten (10).Hu nvoedin gword thierdoo r saaier,e n nietnoodzakelijk e gezonder.He t ideeda the tdiabetesdiee t bestaat uit verbodenvoedingsmiddele n isee nonjuis t idee.Begeleidin g vandiabete n diee r opgerich t ist evoorkome nda tdiabete ndenke nda tbepaald e produkten verboden zijnka nbijdrage n aanhe tvermindere nva nhe tproblematisch e karakter van het dieet. Inhoofdstu k 8word t geconcludeerd datdieetadvieze ndi eweini g aanleiding geven totmoeilijkhede n plezieriger zijno mme e televe ne n tegelijkertijd makkelijker omo pt evolgen .Vervolgen sworde ne r suggestiesgedaa no md e -107-

diabetes-variatielijstenoptimaa lt elate nbijdrage naa nee nz ogroo t mogelijkevariati ei nd evoedin gva ndiabeten .Oo kword tvoorgestel do m consultenva ndiëtiste nme tdiabete nt ebasere no pd emoeilijkhede ndi e diabetenervare nme thu ndieetadvies .Tijden sdi tconsul tka nd ediëtis tme t dediabee tzoeke nnaa reffectiev emaniere no mdez emoeilijkhede ni nd e toekomstzovee lmogelij kt evoorkomen .I nd elaatst eparagraa fva nhoofdstu k8 wordenenkel esuggestie sgedaa no md evoedingsvoorlichtin gaa nd eNederlands e bevolkingt everbeteren .

References

1.Ar yDV ,Toober tD ,Wilso nW ,Glasgo wRE .Patien tperspectiv eo nfactor s contributingt onon-adherenc et odiabete sregimen .Dia bCar e 1986;9:168-172. 2.Glasgo wRE ,McCau lKD ,Schafe rLC .Barrier st oregime nadherenc eamon g personswit hinsulin-dependen tdiabetes .J Beha vMe d1986;9:65-77 . 3.Hous eWC ,Pendleto nL ,Parke rL .Patients 'versu sphysicians 'attribution s ofreason sfo rdiabeti cpatients 'non-complianc ewit hdiet .Dia bCar e 1986;9:434. 4.Jenn yJL .A compariso no ffou rag egroups 'adaptatio nt odiabetes .Ca nJ PublHealt h1984;75:237-244 . 5.Christense nNK ,Terr yRD ,Wyät tS ,Picher tJW ,Loren zRA .Quantitativ e assessmento fdietar yadherenc ei npatient swit hinsulin-dependen t diabetesmellitus .Dia bCar e1983;6:245-250 . 6.Glan zK .Nutritio neducatio nfo rris kreductio nan dpatien teducation :a review.Pre vMe d1985;14:721-752 . 7.Pennings-va nde rEerde nL .Probleme ne noplossinge nva nadolescente nme t diabetesmellitus .Utrecht :Rijksuniversitei tUtrecht ,1986 . 8.Hein eRJ ,Schoute nJA .He tdiabetesdieet :nie tander sda nvoedin gvoo r gezondemensen .Ne dTijdsch rGenees k1984;128:524-1528 . 9.Terpstr aJ .Sucros etoegestaa nbi jdiabete smellitus ?Ne dTijdsch rGenees k 1983,-49:2255 . 10.Niewin dAC .Diabete san ddiet :foo dchoices .Proefschrift , LandbouwuniversiteitWageningen ,1989 . 11.Chantela uE ,Sprau lM ,Mulhause rI ,Gaus eR ,Berge rM .Long-ter msafety , efficacyan dside-effect so fCSI Itreatmen tfo rinsulin-dependen tdiabete s mellitus:a on ecente rexperience .Diabetologi a (inpress) . 12.Henr yCL ,Heato nKW ,Manhir eA ,Harto gM .Die tan dth ediabetic :th e fallacyo fa controlle dcarbohydrat eintake .J Hu mNut r1981;35:102-5 . -108-

CURRICULUM VITEA

RolandDingema nFriel ewer d geboreno p2 9augustu s195 7t ePijnacker .Hi j behaaldehe tAtheneum- Bdiplom ao phe tCorderiu sColleg et eAmersfoor ti n 1975.Hetzelfd e jaarbego nhi jme tzij nstudi eVoedin gaa nd e Landbouwuniversiteit teWageningen .Zij npraktijktij d brachthi jdoo ri n India,me tonderzoe k naar erf-tuinen.I n198 3rondd ehi jzij nstudi ea fme td e hoofdvakkenVoedingslee re nVoorlichtingskunde .Tijden s zijnstudi ewa shi j alscursusleide r gezondheidsvoorlichting verbonden geweestaa nhe tInstituu t voorToegepast eVoorlichtingskunde .N azij nstudi eheef thi jo pd evakgroe p HumaneVoedin ggewerk taa nhe tvoorste lvoo r onderzoek naard ehanteerbaarhei d vanhe tdiabetesdieet .Vana faugustu s198 3wa shi jdocen t Voorlichtingskunde enOnderzoekstechnieke nbi jd eHoger eLandbouwschoo l teDeventer .Vana f januari 1986i shi jal swetenschappelij k assistentverbonde naa nd evakgroe p HumaneVoedin gva nd eLandbouwuniversitei t teWageninge nwaa rhi jhe ti ndi t proefschiftbeschreve nonderzoe k heeftgedaan .