Elka Humphrys|Jenni Burt|Greg Rubin|Jon Emery|Fiona M Walter
The influence of health literacy on the timely diagnosis of symptomatic cancer: A systematic review
University of Cambridge|University of Cambridge|Newcastle University|Victorian Comprehensive Cancer Centre|University of Melbourne|University of Cambridge
european journal cancer carevolume 28 issue 1 e12920 feature review paperopen access influence health literacy timely diagnosis symptomatic cancer systematic review elka humphrys corresponding author elka humphrys esh29medschlcamacuk orcidorg0000000261270157 primary care unit department public health primary care university cambridge cambridge uk correspondence elka humphrys primary care unit university cambridge strangeways research laboratories worts causeway cambridge cb1 8rn uk email esh29medschlcamacuksearch papers authorjenni burt jenni burt orcidorg000000020037274x cambridge centre health services research department public health primary care university cambridge cambridge uksearch papers authorgreg rubin greg rubin orcidorg0000000249670297 institute health society sir james spence institute newcastle university newcastle upon tyne uksearch papers authorjon emery jon emery orcidorg0000000252746336 department general practice centre cancer research university melbourne victorian comprehensive cancer centre melbourne victoria australiasearch papers authorfiona walter fiona walter orcidorg0000000271916476 primary care unit department public health primary care university cambridge cambridge uksearch papers author elka humphrys corresponding author elka humphrys esh29medschlcamacuk orcidorg0000000261270157 primary care unit department public health primary care university cambridge cambridge uk correspondence elka humphrys primary care unit university cambridge strangeways research laboratories worts causeway cambridge cb1 8rn uk email esh29medschlcamacuksearch papers authorjenni burt jenni burt orcidorg000000020037274x cambridge centre health services research department public health primary care university cambridge cambridge uksearch papers authorgreg rubin greg rubin orcidorg0000000249670297 institute health society sir james spence institute newcastle university newcastle upon tyne uksearch papers authorjon emery jon emery orcidorg0000000252746336 department general practice centre cancer research university melbourne victorian comprehensive cancer centre melbourne victoria australiasearch papers authorfiona walter fiona walter orcidorg0000000271916476 primary care unit department public health primary care university cambridge cambridge uksearch papers author first published 16 october 2018 httpsdoiorg101111ecc12920citations 15 funding information research funded medical research council raymond beverly sackler fund part ehs phd jb supported national institute health research school primary care research je supported national health medical research council practitioner fellowship fmw supported national institute health research clinician scientist award aboutsectionspdf toolsrequest permissionexport citationadd favoritestrack citation shareshare give accessshare full text accessshare fulltext accessplease review terms conditions use check box share fulltext version articlei read accept wiley online library terms conditions useshareable linkuse link share fulltext version article friends colleagues learn morecopy url share linkshare onfacebooktwitterlinkedinredditwechat abstract low health literacy associated poor cancer screening uptake difficulty making treatment choices reduced quality life following cancer diagnosis yet unclear whether health literacy influences pathway diagnosis patients cancer symptoms systematic review aimed evaluate influence health literacy timely diagnosis symptomatic cancer literature searched january 1990 may 2017 using medline embase scopus assia cinahl psycinfo three papers met inclusion criteria reported two qualitative studies one quantitative adult patients diagnosed gastrointestinal colon rectum pancreas cervical breast cancer definition assessment health literacy varied studies descriptions pathway diagnosis due methodological weaknesses identified conclusions limited however studies highlight important considerations definition measurement health literacy research required clearly defines health literacy follows principles aarhus statement assess influence health literacy pathway cancer diagnosis protocol review registered prospero crd42016048917 1 introduction public health england 2015 described health literacy bridge people health settings reflecting patients access understand evaluate use healthcare information navigate services available multidimensional concept reflects understanding health literacy developed since 1990s first widely used instruments measure health literacy published focusing comprehension numeracy skills baker williams parker gazmararian nurss 1999 davis et al 1991 recent years studies explored health literacy relation cancer found low health literacy associated poor cancer screening uptake oldach katz 2014 von wagner semmler good wardle 2009 difficulty making treatment decisions diagnosed amalraj starkweather nguyen naeim 2009 koay schofield jefford 2012 reduced quality life cancer patients husson mols fransen pollfranse ezendam 2015 song et al 2012 oldach katzs 2014 review identified 14 studies cancer screening colorectal breast cervical prostate concluded trend towards low screening rates low health literacy could influenced association low health literacy low knowledge cervical cancer screening lindau et al 2002 burden patients low health literacy read understand written information relation colorectal cancer screening von wagner et al 2009 understanding information written oral also difficult low health literacy faced complex treatment options thereby limiting engagement participation shared decisionmaking amalraj et al 2009 difficulties communication may also act barrier accessing support services possibly contributing worse mental health outcomes seen low health literate men newly diagnosed prostate cancer song et al 2012 suggests low health literacy may affect cancer screening treatment pathways remains unclear health literacy may influence timely diagnosis cancer symptomatic patients promoting timely diagnosis priority improving outcomes cancer patients since launch national awareness early diagnosis initiative naedi 2008 uk key findings identified significant variation time diagnosis across cancers symptom onset first presentation primary care subsequent referral cancer diagnosis din et al 2015 lyratzopoulos et al 2015 frameworks categorisation delay model olesen hansen vedsted 2009 model pathways treatment scott walter webster sutton emery 2013 walter webster scott emery 2012 useful describing intervals along pathway diagnosis aarhus statement suggested ways improve design reporting studies weller et al 2012 outcomes could improved decreasing time patient first noticing potential cancer symptom seeking help appraisal helpseeking patient interval reducing time initial consultation healthcare professional referral secondary care diagnosis diagnostic primary secondary care interval considering pathway diagnosis possible individuals health literacy may influence timely diagnosis persons ability access understand cancer symptom information appraise information relation bodily changes navigate healthcare system presenting healthcare practitioner accessing specialist care required receive diagnosis systematic review therefore aimed evaluate impact health literacy timely diagnosis symptomatic cancer 2 methods 21 search strategy searched peerreviewed literature published worldwide 1 january 1990 19 may 2017 search limited 1990 onwards health literacy relatively new field number studies expanding following publication 1991 first widely used health literacy instrument rapid estimate adult literacy medicine realm davis et al 1991 six bibliographic databases searched strategy developed run medline table 1 adapted embase scopus assia cinahl psycinfo articles identified reference lists included studies work published included authors running forward citation search scopus grey literature excluded prior scoping exercise identified relevant information sources citations imported managed endnote x7 table 1 search strategy medlinea search query 1 cancermp 2 tumourmp 3 tumormp 4 malignanmp 5 neoplasmmp 6 exp neoplasm 7 or16 8 exp health literacy 9 health literacymp 10 health literatemp 11 health literaciesmp 12 literacymp 13 literatemp 14 literaciesmp 15 cancer literacymp 16 cancer literatemp 17 numeracymp 18 numeratemp 19 or818 20 7 19 21 systematic reviewti 22 20 21 23 limit 22 yr1990 current bold used identify individual searches grouped together also used embase 22 inclusion exclusion criteria studies published language included focused adult patients aged 18 years older primary diagnosis cancer explored influence health literacy literacynumeracy related health yet termed health literacy relation time diagnosis symptomatic cancer included studies evaluating total time diagnosis symptom onset diagnosis focusing one intervals along pathway appraisal helpseeking diagnostic intervals systematic reviews reviews editorials letters excluded along studies reporting time diagnosis without health literacy vice versa studies focusing recurrent cancers cancer incidence survival mortality risk factors genetics screening prevention assessing validity referral decisions 23 study selection following removal duplicate references eh screened titles abstracts inclusion exclusion criteria random sample 10 total assessed fmw jb confirm agreement full text obtained studies identified potentially relevant review three reviewers eh fmw jb screened fulltext articles identify studies inclusion review 24 data extraction data extracted eh included studies study type recruitment setting data collection details participant characteristics patient pathwayinterval data defined within study health literacy data including definition health literacy instrument used findings relation time diagnosis extracted data reviewed fmw jb confirm completeness 25 quality assessment quality studies assessed eh reviewed fmw jb using joanna briggs institute critical appraisal tools joanna briggs institute 2016 aim quality assessment determine validity results based design methods analysis conclusions study assess relative contribution study review 26 protocol registration reporting prior starting review protocol registered prospero crd42016048917 international prospective register systematic reviews review reported based guidelines proposed prisma statement preferred reporting items systematic reviews metaanalyses moher liberati tetzlaff altman 2009 3 results 31 study selection search identified 5188 citations removing duplicates 2304 titles abstracts screened inclusion exclusion criteria identify 26 potentially includable studies figure 1 following fulltext assessment three studies qualified inclusion reference lists included studies publications authors studies reviewed forward citation search scopus identify additional relevant studies figure 1open figure viewerpowerpoint prisma flow diagram systematic review process 32 study characteristics three included studies set japan usa egypt included patients diagnosed gastrointestinal colon rectum pancreas cervical breast cancer table 2 two studies used qualitative methods third reported survey number participants ranged 10 37 overall sample predominately female 92 studies set usa egypt published english study set japan published japanese therefore professionally translated due heterogeneity studies possible synthesise findings therefore chose use descriptive approach analyse report findings table 2 study participant characteristics author year country language setting cancer sample size age range years female n study type recruitment nakagami akashi 2010 japan japanese inpatient colon rectum pancreas 10 early 40slate 70sa 5 50 qualitative prior surgery tecu potter 2012 usa english outpatient tumour clinic cervical 37 2562 37 100 survey first chemotherapy treatment mcewan et al 2014 egypt english cancer treatment centreb breast 15 2960 15 100 qualitative posttreatmentc age defined within study precise age participants stated b setting defined within previous associated quantitative study corbex 2010 c timing recruitment posttreatment specified 33 quality included studies studies assessed based methodological quality conceptual clarity relation definitions time diagnosis health literacy 331 methodological quality table 3 summarises methodological quality studies ranged poor adequate study details setting sampling strategy exclusion criteria poorly described one study fully describing participant inclusion criteria nakagami akashi 2010 small sample sizes impacted analysis nakagami akashi unable reach theoretical saturation based grounded theory approach used strauss corbin 1998 reporting qualitative studies also unclear whether data accurately reflected voices participants minority mcewan underwood corbex 2014 nakagami akashi 2010 acknowledging limitations study design conclusions studies excluded based quality assessment alone table 3 methodological quality included papers 332 conceptual clarity time diagnosis studies aimed explore diagnostic pathway patients perspective symptom onset diagnosis start treatment table 4 summarises definitions used authors describe intervals along pathway corresponding interval defined model pathways treatment scott et al 2013 walter et al 2012 categorisation delay model olesen et al 2009 definitions intervals within studies poor one study providing definition symptom onset none defining date diagnosis therefore unclear time points defining beginning end intervals way date diagnosis identified important issue raised aarhus statement highlighted little consistency definition measurement intervals key time points along patient pathway weller et al 2012 table 4 definitions intervals used included studies author year authors interval definition model pathways treatment categorisation delay model nakagami akashi 2010 initial symptom detection cancer diagnosis appraisal helpseeking diagnostic patient primary care secondary care diagnostic tecu potter 2012 symptom onset first presentation appraisal helpseeking patient symptom onset receipt first treatment appraisal helpseeking diagnostic pretreatment total patient diagnostic treatment mcewan et al 2014 symptom discovery initial medical consultation appraisal helpseeking patient initial medical consultation diagnosis diagnostic primary care secondary care diagnostic diagnosis initiation treatment pretreatment treatment pretreatmenttreatment interval final interval within model focus review study tecu potter one provide details interval lengths reported patients based data average time symptom onset first presentation ie patient appraisal helpseeking interval 526 months sd unknown symptom onset treatment onset ie total interval 882 months sd 1141 range 148 months two qualitative studies seek quantify time symptom onset diagnosis although patients narratives used demonstrate time diagnosis may influenced mcewan et al 2014 nakagami akashi 2010 participants included qualitative study mcewan et al sampled prior quantitative study assessing time diagnosis breast cancer patients based quantitative study data 12 15 participants selected interview experienced delay appraisal helpseeking diagnostic pretreatment interval although authors state constituted delay health literacy definition assessment health literacy varied three included studies table 5 two defined concept health literacy based previous definitions tecu potter referencing us department health human services healthy people 2000 nakagami akashi referring seven definitions focus three mancuso 2008 murata arakita shirai 2006 nutbeam 2000 mcewan et al used definition describing health literacy relation symptom interpretation knowledge networks however also used conceptual framework social ecological model scheidner 2006 analyse present data extended definition health literacy include patient beliefs around risk factors table 5 health literacy definitions assessment used studies author year health literacy assessment literature referenced definition literature nakagami akashi 2010 nutbeama nutbeam 2000 sperosb speros 2005 mancusoc mancuso 2008 abbreviated definition stated paper ability acquire information relating illness medicine health information medicine health ability compute ability read medical health information ability understand medical health information ability take role patient ability take appropriate decisions evaluate explored via interviews murata murata et al 2006 reading writing computation information acquisition perception cognition understanding analysis selection evaluation action response provision others world health organisation nutbeam 1998 cognitive social skills determine motivation ability individuals gain access understand use information ways promote maintain good health american medical association ad hoc committee health literacy 1999 constellation skills including ability perform basic reading numeral tasks required function healthcare environment us department health human services healthy people 2000 degree individuals capacity obtain process understand basic health information services needed make appropriate health decisions tecu potter 2012 us department health human services healthy people 2000 realmsf national network libraries medicine nnlm 2011 provide unique definition health literacy references us department health human services definition mcewan et al 2014 none risk factors symptom interpretation knowledge networks authors definition social ecological model scheidner2006 explored via interviews original definition nutbeam 2000 personal cognitive social skills determine ability individuals gain access understand use information promote maintain good health b speros 2005 provide unique definition health literacy instead references definitions provided world health organisation american medical association us department health human services c original definition mancuso 2008 process evolves ones lifetime encompasses attributes capacity comprehension communication attributes health literacy integrated within preceded skills strategies abilities embedded within competencies needed attain health literacy assess health literacy tecu potter used shortform realm realmsf davis et al 1993 validated instrument designed assess pronunciation medical words widely used health literacy research primarily assessment comprehension rather assessment ability obtain use health information analysis assessment realmsf score relation time presentation limited tecu potter 2012 two qualitative studies explored health literacy via interviews patients relation definitions health literacy proposed within study 34 influence health literacy time diagnosis two qualitative studies took different approaches exploring health literacy nakagami akashi focusing analysis aspects health literacy influenced pathway diagnosis symptomatic asymptomatic patients mcewan et al explored many factors influencing pathway health literacy one studies discussed health literacy relation awareness knowledge nakagami akashi also considering symptom interpretation influenced appraisal helpseeking intervals pathway diagnosis patient attributed benign cause symptoms action watch wait often resulting lengthening appraisal interval nakagami akashi referred forming disease hypothesis health literacy skills used process symptom information consider prior experience knowledge understand evaluate symptoms symptoms persisted worsened patient would often obtain information sources reevaluate symptoms context new information nakagami akashi also considered role social networks pathway diagnosis important aspect current multifactorial models health literacy osborne batterham elsworth hawkins buchbinder 2013 found knowledge obtained family friends neighbours could often prompt helpseeking considering risk factor knowledge participants study mcewan et al able identify multiple possible risk factors although many believed angry upset caused cancer participants think risk cancer time presentation longer authors stated poorer health literacy increased delays mcewan et al 2014 focusing diagnostic interval nakagami akashi found lengthened alternative diagnosis suggested patient monitored given medication symptoms instances patients restart process understanding evaluating acting symptoms relied health literacy ability contrast qualitative studies survey study conducted tecu potter quantified time diagnosis explored health literacy using realmsf mean realmsf score 6008 sd 1263 range 066 eight 22 women scoring 54 less demonstrating low health literacy authors stated statistically significant correlations found realmsf scores patient interval time symptom onset first presentation across whole cohort however provide data substantiate subgroup analysis eight women low health literacy found four patient interval 612 months although patient intervals reported 29 women scored 54 realmsf survey also explored symptom experience knowledge helpseeking behaviours yet presented descriptive statistics without analysis factors may correlate health literacy patient interval 4 discussion systematic review sought explore health literacy influence patients pathway diagnosis cancer health literacy may affect patients ability access understand cancer symptom information appraise information relation bodily changes navigate healthcare system access specialist care required obtain diagnosis although search strategy broad undertaken across multiple databases three studies methodologically poor met inclusion criteria important gap literature considering role health literacy timely diagnosis cancer included studies used three different approaches assess health literacy reflects current challenge health literacy research respect definitions measurement sorensen et al 2012 conducted systematic review identified 17 definitions health literacy jordan et al altin et al identified 36 instruments 19 17 respectively measure health literacy general population ie disease specific published 1990 2008 jordan osborne buchbinder 2011 january 2009 april 2013 altin finke kautzfreimuth stock 2014 systematic review health literacy adolescents young adults discussed current literature focuses quantifying health literacy usually assessing abilities adequate inadequate whereas qualitative approach could help understand wider concept factors influencing health literacy ability sansomdaly et al 2016 tecu potter opted use realmsf measure health literacy yet concluded comprehensive tool would appropriate study aims definition health literacy based us department health human services healthy people 2000 definition focuses individuals obtain process use health information services whereas realmsf test comprehension therefore intended measure application health information mcewan et al proposed