Dominic Taylor|J. Andrew Bradley|Clare Bradley|Heather Draper|Johnson Rj|Wendy Metcalfe|Gabriel C. Oniscu|Matthew Robb|Charles Tomson|Chris Watson|Rommel Ravanan|Paul Roderick
Limited health literacy in advanced kidney disease
University of Southampton|National Health Service|National Institute for Health Research|University of Cambridge|Royal Holloway University of London|University of Birmingham|National Health Service|Renal Association|Edinburgh Royal Infirmary|National Health Service|Freeman Hospital|National Institute for Health Research|University of Cambridge|National Health Service|University of Southampton
limited health literacy may reduce ability patients advanced kidney disease understand disease treatment take part shared decision making dialysis transplant patients limited health literacy associated low socioeconomic status comorbidity mortality investigated prevalence associations limited health literacy using data united kingdomwide access transplantation transplant outcome measures attom program incident dialysis incident transplant transplant waitlisted patients ages 18 75 recruited 2011 2013 data collected patient questionnaires case notes score 2 singleitem literacy screener used define limited health literacy univariate multivariate analyses performed identify patient factors associated limited health literacy studied 6842 patients 2621 incident dialysis 1959 waitlisted 2262 incident transplant limited health literacy prevalence 20 15 12 group respectively limited health literacy independently associated low socioeconomic status poor english fluency comorbidity however transplant waitlisting preemptive transplantation livedonor transplantation associated increasing health literacy limited health literacy may reduce ability patients advanced kidney disease understand disease treatment take part shared decision making dialysis transplant patients limited health literacy associated low socioeconomic status comorbidity mortality investigated prevalence associations limited health literacy using data united kingdomwide access transplantation transplant outcome measures attom program incident dialysis incident transplant transplant waitlisted patients ages 18 75 recruited 2011 2013 data collected patient questionnaires case notes score 2 singleitem literacy screener used define limited health literacy univariate multivariate analyses performed identify patient factors associated limited health literacy studied 6842 patients 2621 incident dialysis 1959 waitlisted 2262 incident transplant limited health literacy prevalence 20 15 12 group respectively limited health literacy independently associated low socioeconomic status poor english fluency comorbidity however transplant waitlisting preemptive transplantation livedonor transplantation associated increasing health literacy term health literacy describes patients ability access understand interpret use healthrelated information manage improve health1sorensen k van den broucke fullam j et alfor hlseu consortium health literacy project europeanhealth literacy public health systematic review integration definitions modelsbmc public health 2012 12 80crossref pubmed scopus 2357 google scholar concept health literacy distinct influenced general literacy numeracy2baker dw meaning measure health literacyj gen intern med 2006 21 878883crossref pubmed scopus 753 google scholar limited health literacy associated difficulty managing medications poorer overall health increased mortality less efficient use health services general populations3berkman nd sheridan sl donahue ke et allow health literacy health outcomes updated systematic reviewann intern med 2011 155 97107crossref pubmed scopus 2542 google scholar existence social gradient health literacy4sorensen k pelikan jm rothlin f et alfor hlseu consortiumhealth literacy europe comparative results european health literacy survey hlseueur j public health 2015 25 10531058crossref pubmed scopus 968 google scholar whereby low socioeconomic status also low health literacy may promote health inequity poor health literacy also appears mediate negative effect nonwhite ethnicity patient activation separate construct enables effective decision making5smith sg curtis lm wardle j et alskill set mind set associations health literacy patient activation healthplos one 2013 8 e74373crossref pubmed scopus 113 google scholar 6gwynn kb winter mr cabral hj et alracial disparities patient activation evaluating mediating role health literacy path analysespatient educ couns 2016 99 10331037abstract full text full text pdf pubmed scopus 28 google scholar way health literacy differences may perpetuate effect ethnicity access health care services patients advanced kidney disease may receiving dialysis preparing transplantation living kidney transplant required cope complex medication regimens dietary changes limited flexibility dialysis treatment schedules frequent outpatient appointments activities require health navigation skills ability gain health knowledge motivation problemsolving abilities components personal health literacy7paascheorlow mk wolf ms causal pathways linking health literacy health outcomesam j health behav 2007 31 s1926crossref pubmed google scholar shared decisionmaking strategies promotion selfcare improve patient satisfaction health kidney disease8laitner tomson c elias r et alshared decisionmaking renal care call actionbr j renal med 2012 17 8google scholar reflected national health care policies9national health service expert patients programme available httpwwwnhsuknhsenglandaboutnhsservicesdoctorspagesexpertpatientsprogrammeaspx accessed march 2016google scholar 10shafir rosenthal j shared decision making advancing patientcentered care state federal implementationnatl acad state health pol 2012 google scholar however adequate health literacy prerequisite patient engagement shared decision making11barton jl trupin l tonner c et alenglish language proficiency health literacy trust physician associated shared decision making rheumatoid arthritisj rheumatol 2014 41 12901297crossref pubmed scopus 71 google scholar 12mackey lm doody c werner el fullen b selfmanagement skills chronic disease management role health literacy havemed decis making 2016 36 741759crossref pubmed scopus 138 google scholar interventions attempt improve health literacy compensate poor health literacy become priority kidney disease care13tuot ds diamantidis cj corbett cf et althe last mile translational research improve ckd outcomesclin j soc nephrol 2014 9 18021805crossref pubmed scopus 11 google scholar 14campbell z stevenson j mccaffery k et alinterventions improving health literacy people chronic kidney diseasecochrane database syst rev 2016 google scholar although strategies could effective known associations limited health literacy mechanisms effect outcomes recent systematic review effects health literacy health outcomes included studies kidney disease patients identified need largesample nationally representative data3berkman nd sheridan sl donahue ke et allow health literacy health outcomes updated systematic reviewann intern med 2011 155 97107crossref pubmed scopus 2542 google scholar general populations lower literacy numeracy associated presence longterm health conditions15moon g aitken g roderick p et altowards understanding relationship functional literacy numeracy geographical health inequalitiessoc sci med 2015 143 185193crossref pubmed scopus 12 google scholar mortality older people16bostock steptoe association low functional health literacy mortality older adults longitudinal cohort studybmj 2012 344 e1602crossref pubmed scopus 356 google scholar usa prevalence limited health literacy associations described chronic kidney disease patients17fraser sd roderick pj casey et alprevalence associations limited health literacy chronic kidney disease systematic reviewnephrol dial transplant 2013 28 129137crossref pubmed scopus 123 google scholar although marked heterogeneity reported prevalence limited health literacy likely related relatively small sample size use different health literacy measures varying characteristics study participants poorer health literacy associated mortality reduced likelihood referral transplantation us hemodialysis patients recipients livedonor kidney transplants found health literate receiving deceaseddonor transplants18cavanaugh kl wingard rl hakim rm et allow health literacy associates increased mortality esrdj soc nephrol 2010 21 19791985crossref pubmed scopus 188 google scholar 19cavanaugh kl wang wallston k et alinternational variation characteristics health literacy association mortality dialysisj soc nephrol 2015 26 316agoogle scholar 20grubbs v gregorich se perezstable ej hsu cy health literacy access kidney transplantationclin j soc nephrol 2009 4 195200crossref pubmed scopus 125 google scholar 21dageforde la petersen aw feurer id et alhealth literacy living kidney donors kidney transplant recipientstransplantation 2014 98 8893crossref pubmed scopus 40 google scholar uk patients kidney disease little work undertaken identify scale health literacy problem associations large ukwide study 6800 patients aimed determine prevalence limited health literacy associations demographics comorbidity socioeconomic status patients 3 different stages treatment initiation dialysis kidney transplant waiting list point kidney transplantation also considered potential implications patients progress toward transplantation total 6842 patients recruited 2621 incident dialysis patients 1959 waitlisted patients 2262 incident transplant patients including 469 patients contributed data 1 group process patient inclusion shown figure 1 health literacy measured using singleitem literacy screener sils often need someone help read instructions pamphlets written material doctor pharmacy options 1never 2rarely 3sometimes 4often 5always responses sometimes often always selected represent limited health literacy decision informed work sils validated short test functional health literacy adults stofhla 36item health literacy assessment tool22morris ns maclean cd chew ld littenberg b single item literacy screener evaluation brief instrument identify limited reading abilitybmc fam pract 2006 7 21crossref pubmed scopus 502 google scholar 23brice jh foster mb principe et alsingleitem twoitem literacy screener predict stofhla among adult hemodialysis patientspatient educ couns 2014 94 7175abstract full text full text pdf pubmed scopus 24 google scholar responses sils group shown figure 2 prevalence limited health literacy 20 incident dialysis group 15 waitlisted group 12 incident transplant group distribution individual sils scores prevalence limited health literacy differed significantly groups p 0001 figure 3 shows patient pathways transplantation prevalence limited health literacy among patients group subgroupfigure 3patient pathways transplantation point prevalence limited health literacy among patients stage markers c indicate points patient pathways influenced deceased donor dd transplant waitlisting selection process although dd waitlisting necessary achieve livedonor ld transplant ld recipients would added waiting list time transplantation ckd chronic kidney disease esrd endstage renal disease hl health literacyview large image figure viewerdownload ppt table 1 shows patient characteristics univariate analyses comparing patients adequate limited health literacy within group figure 4 shows results fully adjusted logistic regression models identifying patient factors associated limited health literacytable 1patient characteristics group health literacy statusincident dialysis n 2463wait listed n 1859incident transplant n 2051heath literacypheath literacypheath literacypadequatelimitedadequatelimitedadequatelimited1982 80481 201589 85270 151801 88250 12male1294 65311 650795917 58160 5906331128 63152 610575median age iqr58 47 6758 47 66063651 41 6148 39 58000850 39 60495 41 580812ethnicity white1661 84322 6700011223 77166 6100011510 84178 710001 asian140 7107 22153 1068 25137 852 21 black140 739 8173 1126 9118 78 3 chinese15 16 120 17 311 18 3 mixed race25 17 119 13 124 14 1language english first language1800 91338 7000011390 88168 6200011647 92167 670001 first language selfreported english fluencygood114 621 4144 916 6103 610 4moderate54 358 1245 339 1439 231 12poor english13 164 137 0447 1711 142 17 modified charlson comorbidity index0913 46124 2600011108 70152 5600011281 71130 52000112692 35230 48400 2595 35422 2399 4034240 1289 1960 416 676 420 84137 738 821 17 322 11 04individual comorbidities myocardial infarction185 958 12007265 415 6027355 39 40642 heart failure120 635 7030134 210 4011634 26 20587 peripheral vascular disease159 858 12000455 312 5041350 315 60007 cerebrovascular disease142 762 13000176 520 8007075 422 90001 dementia4 020103 020101 006010 respiratory disease214 1159 13031799 616 60870127 714 60391 diabetes690 35301 640001242 1572 270001293 1688 350001 diabetic nephropathy417 21216 460001156 1059 220001210 1275 300001 cirrhotic liver disease23 14 108062 010 01010 11 0410 leukemia5 0251 02102 011 0403762 01010 lymphoma20 12 04028611 072 07109 0500611 psychosis4 029 200012 018 300012 015 20001 depression113 648 10000189 618 70574 415 60118 malignancy263 1341 90006110 711 40084109 611 40294primary renal disease diabetes417 21216 450001156 1059 220001210 1275 300001 glomerulonephritis sle389 2063 13450 2842 16522 2946 18 polycystic kidney disease185 923 5272 1736 13286 1625 10 pyelonephritis tin144 723 5179 1132 12204 1119 8 hypertensive renovascular ischemic nephropathy188 935 7104 717 6113 618 7 other659 33121 25428 2784 31466 2667 27smoking never smoked1103 56282 5904811005 63175 6507731187 66164 660670 exsmoker567 29126 26238 1536 13482 2764 26 current smoker310 1673 15345 2259 22131 722 9median bmi iqr27 23 3227 24 33002226 23 2926 23 30021026 23 2925 23 290606highest educational level none568 30245 510001331 21125 470001311 17112 450001 highschool level858 43156 33805 5195 35925 5296 39 university level355 1839 8340 2225 9436 2414 6 other193 1040 8104 723 9122 726 10car owner1479 75272 5700011268 80174 6500011543 86178 710001homeowner1135 58191 400001934 59106 3900011163 65125 500001marital status married1101 56244 510001801 51128 480770957 53127 510595 living partner135 722 5131 820 7162 917 7 divorced separated240 1285 18226 1438 14190 1132 13 widowed108 539 855 310 452 37 3 single388 2089 19369 2372 27435 2465 26employment full time293 1515 30001399 2515 60001509 2822 90001 part time163 818 4206 1323 9192 1115 6 unemployed145 735 7125 836 13140 827 11 longterm sicknessdisability542 27228 48395 25140 52455 25121 49 student19 11 0228 2038 22 1 retired741 38166 35363 2341 15370 2139 16 working other28 15 123 16 250 37 3 looking home44 212 343 38 343 215 6number children 01575 80360 7500011165 74189 7100161319 73188 750153 12345 1791 19370 2360 22407 2347 19 253 329 650 318 771 415 6bmi body mass index iqr interquartile range sle systemic lupus erythematosus tin tubulointerstitial nephritisresults displayed frequency percentage unless otherwise specified p values indicate results univariate analyses comparing adequate versus limited health literacy bold p values statistically significant group percentages may exactly equal 100 rounding open table new tab bmi body mass index iqr interquartile range sle systemic lupus erythematosus tin tubulointerstitial nephritis results displayed frequency percentage unless otherwise specified p values indicate results univariate analyses comparing adequate versus limited health literacy bold p values statistically significant group percentages may exactly equal 100 rounding incident dialysis group fully adjusted models showed limited health literacy significantly associated younger age poorer english fluency higher comorbidity depression psychosis lower educational level unemployment longterm disability compared fulltime employment absence car home ownership 2 children current smoking associated reduced odds limited health literacy similar associations found waitlisted group although stronger associations limited health literacy unemployment longterm disability detected depression absence home ownership number children significantly associated limited health literacy waitlisted group incident transplant group showed similar patterns association except patients black ethnicity significantly less likely limited health literacy white ethnicity however association relates small number observations 8 black patients group limited health literacy patients asian ethnicity significantly higher odds limited health literacy white patients differences significant adjustment english fluency see supplementary results supplementary table s1 although lower educational level associated limited health literacy 3 groups education predict health literacy entirely 3 10 patients universitylevel qualifications limited health literacy multiple imputations account missing data prevalence limited health literacy group remained pooled estimates logistic regression models 20 imputed datasets group showed major differences compared models including complete cases results models shown supplementary results supplementary table s2 figure 3 shows patient groups subgroups relative prevalence limited health literacy tables 2 3 show univariate multivariate analyses comparing prevalence limited health literacy patient subgroups incident dialysis patients significantly higher prevalence limited health literacy waitlisted patients dialysis figure 3 marker difference statistically significant adjustment socioeconomic status adding adjustment comorbidity reduces effect group likelihood limited health literacytable 2comparison limited health literacy prevalence patient groups univariate analysesunadjusted odds ratio limited health literacy95 cipa waitlisted dialysis compared incident dialysisaexcluding patients recruited 1 groupincident dialysis ref10003waitlisted dialysis077 064092b incident deceased donor transplant compared deceased donor waitlistedaexcluding patients recruited 1 groupwait listed dialysis ref10677deceaseddonor transplant dialysis start095 075120c preemptive deceaseddonor transplant compared preemptively waitlistedaexcluding patients recruited 1 grouppreemptively waitlisted ref10561preemptive deceaseddonor transplant118 068206preemptive listing transplant compared listing transplant dialysis startwait listed dialysis ref10001preemptively waitlisted051 032078deceaseddonor transplant dialysis start ref10057preemptive deceased donor transplant062 035103live donor transplant dialysis start ref10001preemptive livedonor transplant030 013062live donor transplant compared deceased donordeceased donor transplant dialysis start ref10005livedonor transplant dialysis start061 043087deceaseddonor preemptive transplant ref10002livedonor preemptive transplant030 012071ref referencea c refer markers c patient pathways indicated figure 3 groups statistically significant differences univariate analysis included multivariate analyses table 3a excluding patients recruited 1 group open table new tab table 3sequentially fitted logistic regression models reporting odds ratios limited health literacy patient groupsodds ratios limited health literacy 95 ciwaitlisted dialysis compared incident dialysisaexcluding patients recruited incident dialysis waitlisted groupspreemptively waitlisted compared waitlisted dialysispreemptive livedonor transplant compared livedonor transplant dialysis startlivedonor transplant dialysis start compared deceaseddonor transplant dialysis startlivedonor preemptive transplant compared deceaseddonorn 3698n 1783n 704n 1566n 373pppppmodel 1age sex07406208900010500330770002032015067000205704008200020340150780011model 2a ethnicity languageas model 1 plus ethnicity language07105808600010480300770002035016077000905503808100020330140820016model 2b sesas model 1 plus employment car home ownership education08406910100700810511280368046021100004907204910400840471881150097model 3 ethnicity language sesas model 1 plus factors models 2a 2b07906409700270750461250272055024123014606904610300680530201420205model 4 comorbidityas model 3 plus modified charlson index smoking psychosis09207411404390790481310355055025127016307805211702250530201450218ci confidence interval ses socioeconomic statusa excluding patients recruited incident dialysis waitlisted groups open table new tab ref reference c refer markers c patient pathways indicated figure 3 groups statistically significant differences univariate analysis included multivariate analyses table 3 ci confidence interval ses socioeconomic status univariate analysis significant differences limited health literacy prevalence patients waitlisted dialysis recipients underwent deceaseddonor transplantation excluding patients transplanted preemptively marker b figure 3 patients waitlisted preemptively received deceaseddonor preemptive transplant marker c figure 3 preemptive livedonor transplant recipients significantly lower prevalence limited health literacy livedonor recipients transplanted starting dialysis multivariate models adding adjustment socioeconomic status largest effect magnitude difference livedonor transplant recipients significantly lower prevalence limited health literacy deceaseddonor recipients adjustment socioeconomic status preemptively transplanted patients transplanted starting dialysis first ukwide research examine prevalence associations limited health literacy among patients kidney disease compare prevalence dialysis transplanted groups single population large nationwide study 6800 patients ages 75 every renal unit uk showed limited health literacy common prevalence limited health literacy 20 among incident dialysis patients 15 among transplant waitlisted patients 12 among incident transplant patients associated lower employment lower educational level absence car home ownership lower english fluency higher comorbidity prevalence limited health literacy reduced process selection transplantation healthliterate groups livedonor transplant recipients patients listed transplanted preemptively health literacy difference appears related higher socioeconomic status lower comorbidity livedonor preemptively transplanted patients excluded significant differences health literacy remain incident dialysis waitlisted patients adjustment socioeconomic status comorbidity patients asian ethnicity likely limited health literacy adjustment english fluency also found transplanted patients black ethnicity significantly higher health literacy transplanted patients white ethnicity contrasts data usa black ethnicity strongly associated limited health literacy even transplanted patients18cavanaugh kl wingard rl hakim rm et allow health literacy associates increased mortality esrdj soc nephrol 2010 21 19791985crossref pubmed scopus 188 google scholar 24green ja mor mk shields et alassociations health literacy dialysis adherence health resource utilization patients receiving maintenance hemodialysisam j kidney dis 2013 62 7380abstract full text full text pdf pubmed scopus 85 google scholar 25gordon ej wolf ms health literacy skills kidney transplant recipientsprog transplant 2009 19 2534crossref pubmed scopus 72 google scholar intriguing finding based small number observations warrants prospective investigation future work prevalence limited health literacy reported similar values published previously 16 32 dialysis patients18cavanaugh kl wingard rl hakim rm et allow health literacy associates increased mortality esrdj soc nephrol 2010 21 19791985crossref pubmed scopus 188 google scholar 19cavanaugh kl wang wallston k et alinternational variation characteristics health literacy association mortality dialysisj soc nephrol 2015 26 316agoogle scholar 20grubbs v gregorich se perezstable ej hsu cy health literacy access kidney transplantationclin j soc nephrol 2009 4 195200crossref pubmed scopus 125 google scholar 24green ja mor mk shields et alassociations health literacy dialysis adherence health resource utilization patients receiving maintenance hemodialysisam j kidney dis 2013 62 7380abstract full text full text pdf pubmed scopus 85 google scholar 26adeseun ga bonney cc rosas se health literacy associated blood pressure cardiovascular disease risk factors among dialysis patientsam j hypertens 2012 25 348353crossref pubmed scopus 35 google scholar 24 14 transplanted patients21dageforde la petersen aw feurer id et alhealth literacy living kidney donors kidney transplant recipientstransplantation 2014 98 8893crossref pubmed scopus 40 google scholar 25gordon ej wolf ms health literacy skills kidney transplant recipientsprog transplant 2009 19 2534