Importance of health literacy in oncology

REVIEW ARTICLE

Importance of health literacy in oncologyajco_1522 14..23

Kelvin KOAY,1,2 Penelope SCHOFIELD1,2 and Michael JEFFORD1,2

1Department of Nursing and Supportive Care Research, Peter MacCallum Cancer Centre and 2Faculty of Medicine, Dentistryand Health Sciences, University of Melbourne, Melbourne, Victoria, Australia

Abstract

Health literacy refers to one’s ability to obtain, process and understand health information and services toenable sound health decision-making. This is an area of increasing importance due to the complexity of thehealth system, especially in the cancer setting. A certain level of health literacy is required for patients to fullyunderstand health information and services to make sound decisions about their health care, includingdecisions about screening and treatment. Previous research has suggested that a significant proportion of thepopulation may have limited health literacy. Suboptimal health literacy is an independent risk factor for poorhealth outcomes, including increased risk of hospitalization. Cancer patients with poor health literacy mayhave misconceptions about their disease and ineffective communication with their health professionals,leading to unnecessary interventions, under-treatment or poor adherence to their treatment plans. Inaddition, cancer patients who have a poor understanding of their disease may experience greater anxiety andbe more dissatisfied with their care. Various strategies have been suggested to assist cancer patients with lowhealth literacy. However, more work needs to be done to support all cancer patients with varying levels ofhealth literacy, thus enhancing health experiences and health outcomes.

Key words: health literacy, neoplasm, patient education as topic, patient-centered care, physician-patientrelation.

INTRODUCTION

There have been significant changes in the delivery ofhealth care over the last few decades. Among these hasbeen a shift to a more patient-centered approach requir-ing effective partnerships between health-care providersand patients.1–4 Patient-centered health care implies thatinformation and resources be tailored to individualpatients’ understanding of health information and theirability to navigate the health system, also known as“health literacy”. Patients are often required to makeimportant decisions about disease prevention, screeningand treatment based on information provided by healthprofessionals. New technologies, a shift to outpatient

care, strains on the health care system and an increasein treatment choices have inevitably made the healthsystem more complex and fragmented.1,2 These changescreate significant challenges for patients in making deci-sions about their health care. This may be especiallyimportant in the oncology setting due to the high diseaseburden, the availability of cancer screening programs,the complexity of multimodal therapies and the empha-sis on cancer clinical trials. Therefore, the aim of thisarticle is to discuss the definition of health literacy, itsassessment and prevalence, and the impact of healthliteracy on cancer care, as well as strategies available tosupport patients with poor health literacy.

SEARCH STRATEGY ANDSELECTION CRITERIA

Data for this review were identified by searches ofMedline, PsychInfo and the Cumulative Index toNursing and Allied Health Literature using combina-tions of the search terms: “health literacy”, “cancer”,

Correspondence: Associate Professor Michael Jefford, MBBS,MPH, MHlthServMt PhD FRACP, Division of CancerMedicine, Peter MacCallum Cancer Centre, Locked Bag 1,A’Beckett Street, Vic. 8006, Australia.Email: [email protected]

Accepted for publication 24 December 2011.

Asia–Pacific Journal of Clinical Oncology 2012; 8: 14–23 doi:10.1111/j.1743-7563.2012.01522.x

© 2012 Blackwell Publishing Asia Pty Ltd

“physician–patient relations” and “test of functionalhealth literacy”. A total of 98 abstracts were initiallyidentified. Review articles and abstracts not related tocancer care were excluded, with a total of 47 articlesremaining for review. Additionally, the reference lists ofretrieved articles were reviewed. Only articles publishedin English were included. All articles published up untilOctober 2010 were included in the review.

Definition of health literacy

Health literacy is a relatively new concept in clinicalpractice. The term was originally coined in 1974,though it has received significant attention only in thelast decade.5 One of the more widely used definitions is“the capacity to obtain, process and understand healthinformation and services to make sound health deci-sions”.6 According to the same report by the United

States Institute of Medicine, general literacy skillsform the basis of a person’s health literacy, with healthliteracy being the active mediator between individualskills, including their cognitive abilities, social skills andemotional states, and the health context, for example,the media, government agencies and health-care provid-ers.6 Hence, health literacy is more than just literacy andnumeracy skills in the health context. Figure 1a illus-trates the framework of health literacy demonstratedabove. “Health literacy” is an umbrella term encom-passing different aspects of patients’ interaction withthe health system from the patient’s perspective. Thisincludes the ability to communicate, to be involved inclinical care and to access health care.7 A simple yetcomprehensive framework of health literacy fromthe patient’s perspective, as illustrated by Nutbeam,divided health literacy into three main aspects, namelyfunctional health literacy, interactive health literacy

Figure 1 Models of health literacyshowing (a) US Institute of Medicineframework of health literacy6 and(b) Nutbeam’s framework of healthliteracy.8

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and critical health literacy, in order of increased com-plexity.8 Functional health literacy refers to the abilityto understand health information provided. Interactivehealth literacy refers to the capacity to incorporatesocial skills and functional health literacy skills toassume good health-seeking behaviour. Finally, criticalhealth literacy is about applying both functional andinteractive health literacy skills to critically analyseinformation provided for making decisions about per-sonal health care. Figure 1b shows Nutbeam’s frame-work of health literacy.

Measurement of health literacy

In recognition of the importance of health literacy inclinical practice, the measurement of health literacy hasbeen an area of burgeoning research. Various typesof instruments have been developed to measure healthliteracy, including proxy assessments of health literacy,the direct testing of individual health literacy abilitiesand self-report of health literacy abilities.9 While a fewstudies have used proxy measurements of health lite-racy, such as education level,10,11 numerous instrumentsthat directly test individual health literacy abilitieshave been developed to specifically measure healthliteracy.12–14

Self-report measures of health literacy are less oftenpreferred, as patients with poor health literacy are oftenembarrassed to admit problems in this area.5,15–17 Theuse of socioeconomic factors as a proxy measurement ofhealth literacy is convenient but may not be an adequatesurrogate measure of health literacy. For example,several studies have shown a significant mismatchbetween education attainment and reading ability.18

Buchbinder et al. reported that, despite the strong asso-ciation between health literacy and education level, theuse of education level alone as a proxy measure of healthliteracy would have misclassified more than 10% oftheir survey respondents as having good or limitedhealth literacy.15

A large international study on adult literacy and lifeskills (ALLS) coordinated by Statistics Canada and theOrganization for Economic Co-operation and Develop-ment had a specific domain measuring health literacy inits purpose-built instrument.19 Other direct health lite-racy testing tools that have been developed include therapid estimate of adult literacy in medicine (REALM),which measures a person’s ability to correctly pro-nounce common medical words and lay terms14 and thetest of functional health literacy in adults (TOFHLA),derived from hospital materials to assess reading

comprehension and numeracy skills.12 Given that theTOFHLA takes up to 22 min to administer, com-promising its potential routine use in clinical practice,a shortened version of TOFHLA has been developed(S-TOFHLA), which takes up to 12 min to administer.13

The S-TOFHLA has proven to be a reliable and validtest of health literacy, with good criterion validity com-pared to the TOFHLA and REALM.13

Other direct testing instruments, like the newest vitalsign20 and less robust instruments using screening ques-tions to identify patients with poor health literacy havebeen developed.8,21 These instruments tend to be simpleand can be administered quickly, potentially allowingtheir use in routine clinical practice. However, theylack sensitivity and specificity when compared to theTOFHLA, which has been regarded as a standard forassessment of health literacy.22 Despite the widespreaduse of TOFHLA as an instrument, there is a lack ofconsensus on the preferred instrument to measure healthliteracy levels accurately.9 Various instruments could beused together. For example, the newest vital sign may beadministered as a screening tool and the TOFHLA canbe used as a second tool to measure health literacy levelsmore accurately.

Health literacy is considered to include functionalhealth literacy, interactive health literacy and criticalhealth literacy. However, the TOFHLA has been criti-cized for measuring only patients’ functional healthliteracy, which includes their reading ability, comprehen-sion and numeracy skills, but not the broader context ofhealth literacy.9 Recent research has demonstrated thatthere are seven key abilities that people need to be ableto utilise health information.8 These are: knowing whento seek health information, knowing where to seekhealth information, verbal communication skills, asser-tiveness, literacy skills, the capacity to process and retaininformation and application skills.8 Several authors havethus suggested that measures of health literacy shouldassess these domains.9 The health literacy managementscale is one measure that seeks to assess health literacymore broadly.23

In addition, a number of self-report measures ofhealth literacy have been developed. One example is theset of brief screening questions, which asks respondentsto rate their confidence and difficulty in understandinghealth information, using a five-point Likert scale.24 Inaddition, Scales for measuring functional, communica-tive and critical health literacy was developed to assessthe three aspects of health literacy as per Nutbeam’sframework.25 However, the use of these instruments hasbeen limited.

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Prevalence of suboptimal health literacy

Numerous studies have examined the prevalenceof health literacy in various clinical settings as well asat a population level.1,10,14 Variability of measurementmethods has contributed to differences in the reportedprevalence of limited health literacy. For example, theALLS study in the US and Australia, using purpose-built questionnaires with a dedicated health literacycomponent, suggest that significant proportions of thepopulation (30–50%) have limited health literacy.19 Inthe Australian survey, higher education level was asso-ciated with better health literacy scores.19 However,more than 30% of those with a bachelor degree wereclassified as having poor health literacy.19 Respondentswith a bachelor degree generally performed better inthe other domains of literacy and numeracy, includingprose literacy, document literacy and numeracy. About20% of those with a bachelor degree had poor proseliteracy.19 A similar proportion had poor documentliteracy and almost a quarter had poor numeracy.19

While several studies have also revealed consistentfindings using the TOFHLA, both at a population leveland specific clinical settings,17,26–28 a few studies usingTOFHLA as the main instrument reported only amodest proportion of the population (5–10%) withlimited health literacy.5,15,29,30

The TOFHLA was developed and validated throughinterviews with native English speakers.12,13 In subse-quent research the study groups using TOFHLA werevaried. Some investigators included only native Englishspeakers as participants31 while others recruited non-native English speakers as participants, provided theycould understand English.5,15,29,32

Despite discrepant findings regarding the prevalenceof poor health literacy, the assessment of individualhealth tasks via the TOFHLA have consistently foundthat many people struggle with simple health tasks, suchas reading and interpreting a prescription label or anappointment card. A cross-sectional survey of 2659patients in two urban hospitals in the USA found that upto 41.6% of patients could not understand directions fortaking medication on an empty stomach and 26% ofpatients could not comprehend information about whenthe next appointment is scheduled.26

In addition to population surveys, various cross-sectional surveys in specific disciplines of medicine havebeen conducted, including rheumatology, general prac-tice, pediatrics and geriatrics.1,15,27,32–34 This has broughtabout a better understanding of the extent of limitedhealth literacy in specific clinical settings, which may

differ due to different patient socioeconomic character-istics and the nature of the illness.35

There has been very limited research exploring healthliteracy in cancer patients.36–38 Only a few studies haveinvolved cancer patients or cancer survivors, generallystudying perceptions of the risk of cancer recurrenceor satisfaction with the medical decision-makingprocess.36–38 Previous research on health literacy andcancer has focused mainly on the correlation betweenthe health literacy level and participation in cancerscreening programs among non-cancer patients.39–44 Arecent study measured the prevalence of health literacyin head and neck cancer survivors with a total laryngec-tomy.45 However, the study was conducted retrospec-tively and involved only eight participants. Moreover,previous research on health literacy and cancer hastended to use convenience sampling or targeted onlyvery limited groups, such as elderly people or certainethnic groups, like African-Americans, who tend to havelower educational levels.30,39–44,46

Associations and consequences of limited

health literacy

Poor health literacy could be a result of limited abilitiesand/or high health literacy demands. Jordan et al. dem-onstrated that an individual’s health literacy is depen-dent on the relationship between individual capacities,the health-care system and society.7 Hence, besides aperson’s innate abilities, the complex health-care systemand other services in society may make a high demandfor health literacy on patients. Numerous studies haveshown that patients with poor health literacy tend tohave difficulties obtaining, understanding and retaininghealth information.37,47 Suboptimal health literacy, asmeasured by the TOFHLA, is an independent risk factorfor poorer health outcomes, including increased risk ofhospitalization.32,48

Patients’ socioeconomic factors, especially old ageand a low education level, are strongly associated withlower levels of health literacy.5,12,29,30 One study showedthat people without formal education were sevenfoldmore likely to have limited health literacy than thosewith formal education.29 According to Helitzer et al.,people with a high education level may still havedifficulties dealing with health-related information anddecisions.49

The association between old age and poor healthliteracy is particularly important in the cancer sett-ing. This is because 60% of new cancer diagnoses and70% of cancer deaths involve patients over 65 yearsold.50 Furthermore, the population is ageing in many

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developed countries. Several studies have explored theassociation between health literacy levels and gender,though results have been inconsistent.6,29,51

Poor understanding of health information by cancerpatients could negatively impact on patients’ distresslevels. As a result of poor understanding of health infor-mation, patients may feel dissatisfied with their care andhave reduced overall well-being.4 In a study of womenwith early stage breast cancer, patients who felt that theyhad been inadequately informed were twice as likely tobe depressed or anxious than those who felt they werewell informed.52 According to Gamble, patients who didnot receive adequate information about adverse effectsof their treatment or who were expecting only minoradverse effects were likely to suffer greater anxiety thanthe rest.53 Furthermore, a study of patients with prostatecancer found that those with poorer health literacytended to associate prostate cancer with death, fear andsuffering, without much consideration for the stageand nature of disease.54 Hence, well-informed cancerpatients seemed more likely to cope better with theirdisease than those who are inadequately informed.52

Communication issues that hinder

understanding and informed

decision-making

Poor communication by physicians may place a highhealth literacy demand on patients.55 Physicians may usemedical jargon or long and complex sentences whencommunicating with patients.56 In fact, medical termsthat are regarded as “plain English” by medical profes-sionals may be challenging for patients with suboptimalhealth literacy.47 A study by Samora et al. on knowledgeof medical vocabulary among patients from a publicgeneral hospital reported that only 35% of patientsunderstood the word “orally”, 18% had a good under-standing of the word “malignant” and 13% understood“terminal”.57 Kilbridge et al. sought understanding ofterms commonly used in prostate cancer and foundthat less than 50% of men with prostate cancer under-stood common terms used in written materials suchas “erection” and “impotent”.56 Moreover, only 25% ofpatients understood “bowel habits” and a mere 5% ofpatients understood “incontinence”.56 Doctors may beunaware of the prevalence of low health literacy in thecommunity and may fail to recognize that patients donot understand because they lack the capacity to learn,58

and thus place a high demand for health literacy onpatients when communicating with them.

A study on understanding of informed consent incancer patients seeking treatment found that only 60%

of them could recall the purpose and nature of thesuggested treatment procedure one day after the infor-mation was explained to them.59 When discussionsinclude an initial cancer diagnosis or when bad news isexpected, some patients are then unable to absorbfurther information, as their emotional responses mayinterfere with understanding of health information.60

Ineffective communication between patients and healthprofessionals could result in patients turning to alter-nate sources of information. A common practice bypatients with low health literacy is to learn aboutcancer from the previous experiences of familymembers and friends, who may have advanced stagecancer.55 Furthermore, they struggle to clarify their con-cerns about cancer with health care professionals.47,55

A US population-based survey reported by Gansleret al. revealed several misconceptions about cancertreatment.61 These misconceptions could also affectpatients’ acceptance of and adherence to their treat-ment plan. For example, almost half of the respondentsin this study believed that treating cancer with surgerycould cause it to spread throughout the body.61 In addi-tion, 27% of respondents thought that the medicalindustry is withholding a cure for cancer from thepublic in order to increase profits.61 Studies have dem-onstrated that optimally prescribed pain control treat-ments can successfully control pain in more than 80%of cancer patients, however Gansler et al. found that32% of respondents believed (or were uncertain)that pain medications are not effective at reducing theamount of pain that cancer patients suffer.61 Althoughlevels of health literacy were not assessed directlyin this survey, the results indicate that some well-established medical facts about cancer were poorlyunderstood by a sizable proportion of the public,suggesting poor health literacy. The education levels ofrespondents were recorded, with 13% of respondentshaving less than the average education level of thegeneral US population.61 Respondents with higher edu-cation levels had fewer misconceptions, though somemisconceptions were still held by those with a higheducation level.61 This could affect patients’ adherenceto treatment plans, which may impact negatively ontheir physical health. For example, a study on commu-nication with cancer patients revealed that those whofelt they had not received adequate information weremore likely to pursue alternative therapies, such asthe Moerman diet.62 In fact, patients with low healthliteracy were 1.5 to threefold more likely to experiencepoor health outcomes than those with adequate healthliteracy.63

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Consequences of limited health literacy

on cancer care

The concept of health literacy is especially importantin the cancer setting, where making decisions on pre-vention, screening and treatment are becoming morecomplex.64 Adequate health literacy is central toeffective disease prevention and chronic disease self-management.65 Cancer patients are often presented withmultiple, complex and individualized options on cancertreatment,66 hence patients with low health literacy maybe disadvantaged.

Patients with suboptimal health literacy could havedifficulty interpreting information about their diseasewhen communicating with health professionals. Recentstudies have revealed that more than 60% of patientsoverestimated their chances of a cancer cure by 20% ormore than that of their doctors.55,66 Mackillop et al.reported that more than half of patients overestimatedtheir chance of cure.67 One-third of patients with meta-static cancer from different primary cancers actuallythought that the cancer was localized and one-thirdof patients receiving treatments with palliative intentbelieved that they were undergoing curative treatment.67

In this study, 46% of patients did not complete highschool education. These patients were significantly morelikely to have misconceptions regarding treatment intentthan those who completed high school education (50 vs25%).67 Similarly, 72% of patients without high schoolqualification overestimated their chances of cure, com-pared to 38% of those with a high school qualification.67

Despite the associations, misconceptions were stillprevalent among patients with higher education levels.As a result of the misconceptions, patients may drawincorrect conclusions from the data provided to themabout the chance of their cancer responding to treat-ment.47 This may lead to unnecessary interventions orunder-treatment.38

Participation in cancer screening programs

Studies have revealed that people with poor health lit-eracy are significantly less likely to participate in diseaseprevention and health promotion programs.68 Accord-ing to Dolan et al., men with poorer health literacy are1.5 times less likely to know about colorectal cancerscreening tests and 3.5 times more likely to have neverheard about colorectal cancer.69 Additionally, they werefour times less likely to use a fecal occult blood test forcolorectal cancer screening, even if it was recommendedby their physicians.69 Garbers et al. examined participa-tion by women in cervical cancer screening and found

that women with limited health literacy were signifi-cantly less likely to have ever had a cervical cancerscreening test.70 Lindau et al. demonstrated that healthliteracy was a good predictor of knowledge about cer-vical cancer screening.71 There is evidence that peoplewith suboptimal health literacy obtain less informationon cancer prevention or health promotion.47

By contrast, Guerra et al. found that health literacy, asmeasured by S-TOFHLA, is not an independent predic-tor of patients’ participation in colorectal screening.42 Infact, their physician’s recommendation was the mainmotivation behind patients’ decision to participate.42 Onthe other hand, some patients with low health literacymight make a considered choice not to participate incancer screening programs on the basis of belief systemsand personal values. However, this is unlikely to con-stitute a large proportion of those with poor healthliteracy.

Limited participation from people with poor healthliteracy in cancer screening programs could be due todifficulty understanding risk communication and under-standing the effectiveness of preventive approaches. Ofcourse socioeconomic disadvantage, which may be asso-ciated with limited health literacy, may result in reduceduptake of cancer screening for a number of reasons,aside from poor health literacy. Patients with lowerhealth literacy may lack the numeracy skills needed tounderstand and apply information about cancer recur-rence risk or the chance of cancer remission.21,38 Lillieet al. revealed that patients with breast cancer withlower health literacy retained significantly less informa-tion than patients with higher health literacy when com-municating about cancer risks.37

Communication of risk is also made more difficult bythe varying use of simple verbal descriptors, such as lowor high risk, and numerical descriptions.38 The use ofverbal descriptors may be subjective and open to inter-pretation, and may fail to provide useful informationto patients. Brewer et al. found that verbal descriptorswere least easily understood among post-treatmentbreast cancer survivors.38 However, communicating aquantifiable risk is difficult with patients with subopti-mal health literacy, although this group of patients mayprefer to receive a quantified risk.38,55 Interpretation ofrisk of cancer recurrence is challenging for patients withpoor health literacy, even using a variety of differentformats.38 As a result, patients with limited health lit-eracy may be disadvantaged when required to makedecisions about participation in cancer screening pro-grams and treatment plans based on the numerical riskinformation provided.

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Treatment decisions

Written health education materials are extensively usedin clinical practice to inform patients about their disease,treatment options and available supports. Writtenconsent forms are also widely used but many of thesematerials tend to be written at a high reading level.72

An assessment of cervical cancer prevention materialsrevealed that information was written at a reading levelat or above grade eleven.49 A study by Wilson reportedthat average American adults have an education level ofgrade 12, however their average reading level is esti-mated to be grade eight or nine.73 Studies have consis-tently found that patients with limited health literacymay struggle with simple health tasks, including inter-preting instructions on a standard appointment cardor a standard prescription label.12,15 Patients with sub-optimal health literacy could struggle to comprehendthe health education materials and treatment consentforms provided to them, thus impairing their healthdecision-making.

Several groups have made efforts to ensure that cancereducation materials match the reading level of the generalpublic. For example, the US National Work Group onCancer and Literacy advocated the use of plain languagefor both non-written and written materials for allpatients.74 However, a review by Guidry et al. demon-strated that despite the increasing use of plain language,there is still need for improvement.75 Factors that couldaffect patients’ understanding other than language,namely the format of written materials and culturalfactors, were often neglected when developing healtheducation materials.75 This is likely to hamper the effec-tive participation of patients with poor health literacy ininformed decision-making about their treatment.

Strategies to support people with limited

health literacy

Several interventions have been directed at supportingtargeted groups of patients with limited health literacy.Han et al. explored the use of lay health workers toprovide education, counselling and navigation assis-tance for breast cancer screening to first generationKorean–Americans.76 There was a significant 30%increase in mammography participation rates after theintervention.76 Various communication practices havebeen recommended for physicians to enhance patients’understanding from a consultation. These include theuse of a plain language decision aid to present informa-tion about cancer treatment or screening programs in asimple text and numerical format.77,78 Other studies have

advocated the use of a “teach back technique” by askingpatients to repeat the information they received duringa medical consultation in their own words, to ensurethey understood the information.55,79 A study aiming toimprove colorectal cancer screening rates among themedically underserved included health literacy trainingto improve physicians’ communication, thus reducingthe health literacy demand on the patients.80 A nationalaction plan to improve health literacy was recentlyannounced by the US Department of Health and HumanServices, which outlines several goals and strategies toenhance the health literacy of the general public.81

FUTURE RESEARCH

There has been a recent increase in research in the areaof health literacy, which includes explorations of theprevalence of health literacy, socioeconomic determi-nants of health literacy, the impact of limited healthliteracy and consideration of interventions to assistpeople with limited health literacy. However, much ofthis work has focused on the general population or indisciplines of medicine other than cancer. Much of thehealth literacy research involving cancer patients hasbeen suboptimal; using less robust measurement toolsor inadequately selected patient groups. It is crucialto explore the prevalence of limited health literacy inpeople with different cancer types using robust methodsand to determine predictors of poor health literacy in thecancer setting to more easily identify patients who maybe disadvantaged in the health-care system. Comprehen-sive measurement of health literacy remains a challengedue to the broad nature of health literacy. Additionalresearch is needed to develop and validate an instru-ment that measures health literacy in all its aspects. Inaddition, the instrument requires quick administrationto permit its routine use in clinical practice. Currentresearch on interventions to support patients withlimited health literacy has mainly focused on functionalhealth literacy in different clinical settings. Additionalresearch is required to develop more specific interven-tions to enhance patients’ interactive and critical healthliteracy in order to encourage patients to easily raise anydoubt or question with their doctors and subsequentlyengage actively in discussions about their health status,management plan and outcomes. Further, if the broadercontext of health literacy is considered, including accessto health care and government screening programs, itwould be valuable to develop interventions that targetand support patients with low health literacy. Above all,the concept of health literacy needs to be incorporated

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into all aspects of cancer care by all health professionalsto ensure adequate support and optimal informationprovision for all cancer patients with varying healthliteracy levels, thus enhancing patients’ satisfaction,quality of life and adherence to management plans.

REFERENCES

1 Eysenbach G, Kohler C. How do consumers search forand appraise health information on the world wide web?Qualitative study using focus groups, usability tests, andin-depth interviews. BMJ 2002; 324: 573–7.

2 Rees CE, Ford JE, Sheard CE. Evaluating the reliability ofDISCERN: a tool for assessing the quality of writtenpatient information on treatment choices. Patient EducCouns 2002; 47: 273–5.

3 Laine C, Davidoff F. Patient-centered medicine. a profes-sional evolution. JAMA 1996; 275: 152–6.

4 Jefford M, Tattersall MH. Informing and involving cancerpatients in their own care. Lancet Oncol 2002; 3: 629–37.

5 Barber MN, Staples M, Osborne RH, Clerehan R, Elder C,Buchbinder R. Up to a quarter of the Australian populationmay have suboptimal health literacy depending upon themeasurement tool: results from a population-based survey.Health Promot Int 2009; 24: 252–61.

6 Nielsen-Bohlman L, Panzer A, Kindig DA. Health Literacy:A Prescription to End Confusion. National AcademiesPress, Washington DC 2004.

7 Nutbeam D. Health literacy as a public health goal: achallenge for contemporary health education and commu-nication strategies into the 21st century. Health Promot Int2000; 15: 259–67.

8 Jordan JE, Buchbinder R, Osborne RH. Conceptualisinghealth literacy from the patient perspective. Patient EducCouns 2009; 79:36–42

9 Jordan JE, Osborne RH, Buchbinder R. Critical appraisalof health literacy indices revealed variable underlying con-structs, narrow content and psychometric weaknesses.J Clin Epidemiol 2011; 64: 366–79.

10 Hanchate AD, Ash AS, Gazmararian JA, Wolf MS,Paasche-Orlow MK. The demographic assessment forhealth literacy (DAHL): a new tool for estimating associa-tions between health literacy and outcomes in nationalsurveys. J Gen Intern Med 2008; 23: 1561–6.

11 Hoffman-Goetz L, Meissner HI, Thomson MD. Literacyand cancer anxiety as predictors of health status: an explor-atory study. J Cancer Educ 2009; 24: 218–24.

12 Parker RM, Baker DW, Williams MV, Nurss JR. The testof functional health literacy in adults: a new instrument formeasuring patients’ literacy skills. J Gen Intern Med 1995;10: 537–41.

13 Baker DW, Williams MV, Parker RM, Gazmararian JA,Nurss J. Development of a brief test to measure functionalhealth literacy. Patient Educ Couns 1999; 38: 33–42.

14 Davis TC, Crouch MA, Long SW et al. Rapid assessmentof literacy levels of adult primary care patients. Fam Med1991; 23: 433–5.

15 Buchbinder R, Hall S, Youd JM. Functional health lite-racy of patients with rheumatoid arthritis attending acommunity-based rheumatology practice. J Rheumatol2006; 33: 879–86.

16 Baker DW, Parker RM, Williams MV et al. The health careexperience of patients with low literacy. Arch Fam Med1996; 5: 329–34.

17 Parikh NS, Parker RM, Nurss JR, Baker DW, WilliamsMV. Shame and health literacy: the unspoken connection.Patient Educ Couns 1996; 27: 33–9.

18 Larson I, Schumacher HR. Comparison of literacy level ofpatients in a VA arthritis center with the reading levelrequired by educational materials. Arthritis Care Res 1992;5: 13–6.

19 Australian Bureau of Statistics. Health Literacy, AustraliaCat. No. 4833.0. Australian Bureau of Statistics, Canberra2006.

20 Weiss BD, Mays MZ, Martz W et al. Quick assessment ofliteracy in primary care: the newest vital sign. Ann FamMed 2005; 3: 514–22.

21 Schwartz LM, Woloshin S, Black WC, Welch HG. The roleof numeracy in understanding the benefit of screeningmammography. Ann Intern Med 1997; 127: 966–72.

22 Mancuso JM. Assessment and measurement of health lit-eracy: an integrative review of the literature. Nurs HealthSci 2009; 11: 77–89.

23 Buchbinder R, Batterham R, Ciciriello S et al. Health lite-racy: what is it and why is it important to measure?J Rheumatol 2011 38: 1791–7.

24 Chew LD, Bradley KA, Boyko EJ. Brief questions to iden-tify patients with inadequate health literacy. Fam Med2004; 36: 588–94.

25 Ishikawa H, Takeuchi T, Yano E. Measuring functional,communicative, and critical health literacy among diabeticpatients. Diabetes Care 2008; 31: 874–9.

26 Williams MV, Parker RM, Baker DW et al. Inadequatefunctional health literacy among patients at two publichospitals. JAMA 1995; 274: 1677–82.

27 Downey LV, Zun LS. Assessing adult health literacy inurban healthcare settings. J Natl Med Assoc 2008; 100:1304–8.

28 Juzych MS, Randhawa S, Shukairy A, Kaushal P, Gupta A,Shalauta N. Functional health literacy in patients withglaucoma in urban settings. Arch Ophthalmol 2008; 126:718–24.

29 von Wagner C, Knight C, Steptoe A, Wardle J. Functionalhealth literacy and health-promoting behaviour in anational sample of British adults. J Epidemiol CommunityHealth 2007; 61: 1086–90.

30 Donelle L, Arocha JF, Hoffman-Goetz L. Health literacyand numeracy: key factors in cancer risk comprehension.Chronic Dis Can 2008; 29: 1–8.

Health literacy in oncology 21

© 2012 Blackwell Publishing Asia Pty LtdAsia–Pac J Clin Oncol 2012; 8: 14–23

31 Gausman Benson J, Forman WB. Comprehension ofwritten health care information in an affluent geriatricretirement community: use of the test of functional healthliteracy. Gerontology 2002; 48: 93–7.

32 Baker DW, Gazmararian JA, Williams MV et al. Func-tional health literacy and the risk of hospital admissionamong Medicare managed care enrollees. Am J PublicHealth 2002; 92: 1278–83.

33 Baker DW, Wolf MS, Feinglass J, Thompson JA, Gazma-rarian JA, Huang J. Health literacy and mortality amongelderly persons. Arch Intern Med 2007; 167: 1503–9.

34 Federman AD, Sano M, Wolf MS, Siu AL, Halm EA.Health literacy and cognitive performance in older adults.J Am Geriatr Soc 2009; 57: 1475–80.

35 Gazmararian JA, Baker DW, Williams MV et al. Healthliteracy among Medicare enrollees in a managed care orga-nization. JAMA 1999; 281: 545–51.

36 Mohan R, Beydoun H, Barnes-Ely ML et al. Patients’ sur-vival expectations before localized prostate cancer treat-ment by treatment status. J Am Board Fam Med 2009; 22:247–56.

37 Lillie SE, Brewer NT, O’Neill SC et al. Retention and use ofbreast cancer recurrence risk information from genomictests: the role of health literacy. Cancer Epidemiol Biom-arkers Prev 2007; 16: 249–55.

38 Brewer NT, Tzeng JP, Lillie SE, Edwards AS, PeppercornJM, Rimer BK. Health literacy and cancer risk perception:implications for genomic risk communication. Med DecisMaking 2009; 29: 157–66.

39 Holmes-Rovner M, Price C, Rovner DR et al. Men’s theo-ries about benign prostatic hyperplasia and prostate cancerfollowing a benign prostatic hyperplasia decision aid.J Gen Intern Med 2006; 21: 56–60.

40 Miller DP Jr, Brownlee CD, McCoy TP, Pignone MP.The effect of health literacy on knowledge and receiptof colorectal cancer screening: a survey study. BMC FamPract 2007; 8: 16.

41 von Wagner C, Semmler C, Good A, Wardle J. Healthliteracy and self-efficacy for participating in colorectalcancer screening: the role of information processing.Patient Educ Couns 2009; 75: 352–7.

42 Guerra CE, Dominguez F, Shea JA. Literacy and knowl-edge, attitudes, and behavior about colorectal cancerscreening. J Health Commun 2005; 10: 651–63.

43 Lindau ST, Basu A, Leitsch SA. Health literacy as apredictor of follow-up after an abnormal Pap smear: aprospective study. J Gen Intern Med 2006; 21: 829–34.

44 Peterson NB, Dwyer KA, Mulvaney SA, Dietrich MS,Rothman RL. The influence of health literacy on colorectalcancer screening knowledge, beliefs and behavior. J NatlMed Assoc 2007; 99: 1105–12.

45 Beitler JJ, Chen AY, Jacobson K, Owens A, Edwards M,Johnstone PA. Health literacy and health care in an inner-city, total laryngectomy population. Am J Otolaryngol2010; 31: 29–31.

46 Friedman DB, Corwin SJ, Dominick GM, Rose ID. AfricanAmerican men’s understanding and perceptions aboutprostate cancer: why multiple dimensions of health literacyare important in cancer communication. J CommunityHealth 2009; 34: 449–60.

47 Doak CC, Doak LG, Friedell GH, Meade CD. Improvingcomprehension for cancer patients with low literacy skills:strategies for clinicians. CA Cancer J Clin 1998; 48: 151–62.

48 Baker DW, Parker RM, Williams MV, Clark WS. Healthliteracy and the risk of hospital admission. J Gen InternMed 1998; 13: 791–8.

49 Helitzer D, Hollis C, Cotner J, Oestreicher N. Health lit-eracy demands of written health information materials: anassessment of cervical cancer prevention materials. CancerControl 2009; 16: 70–8.

50 Cohen HJ. The cancer aging interface: a research agenda.J Clin Oncol 2007; 25: 1945–8.

51 Paasche-Orlow MK, Parker RM, Gazmararian JA,Nielsen-Bohlman LT, Rudd RR. The prevalence of limitedhealth literacy. J Gen Intern Med 2005; 20: 175–84.

52 Fallowfield LJ, Hall A, Maguire GP, Baum M. Psychologi-cal outcomes of different treatment policies in women withearly breast cancer outside a clinical trial. BMJ 1990; 301:575–80.

53 Gamble K. Communication and information: the experi-ence of radiotherapy patients. Eur J Cancer Care (Engl)1998; 7: 153–61.

54 Dale W. Evaluating focus group data: barriers to screeningfor prostate cancer patients. Cancer Treat Res 1998; 97:115–28.

55 Davis TC, Williams MV, Marin E, Parker RM, Glass J.Health literacy and cancer communication. CA Cancer JClin 2002; 52: 134–49.

56 Kilbridge KL, Fraser G, Krahn M et al. Lack of com-prehension of common prostate cancer terms in anunderserved population. J Clin Oncol 2009; 27: 2015–21.

57 Samora J, Saunders L, Larson RF. Medical vocabularyknowledge among hospital patients. J Health Hum Behav1961; 2: 10.

58 Rogers ES, Wallace LS, Weiss BD. Misperceptions ofmedical understanding in low-literacy patients: implica-tions for cancer prevention. Cancer Control 2006; 13:225–9.

59 Cassileth BR, Zupkis RV, Sutton-Smith K, March V.Informed consent – why are its goals imperfectly realized?N Engl J Med 1980; 302: 896–900.

60 Maguire P, Faulkner A. Communicating with cancerpatients. BMJ 1988; 297: 1610.

61 Gansler T, Henley SJ, Stein K, Nehl EJ, Smigal C, SlaughterE. Sociodemographic determinants of cancer treatmenthealth literacy. Cancer 2005; 104: 653–60.

62 Pruyn JF, Rijckman RM, van Brunschot CJ, van denBorne HW. Cancer patients’ personality characteristics,

22 K Koay et al.

© 2012 Blackwell Publishing Asia Pty Ltd Asia–Pac J Clin Oncol 2012; 8: 14–23

physician-patient communication and adoption of theMoerman diet. Soc Sci Med 1985; 20: 841–7.

63 Dewalt DA, Berkman ND, Sheridan S, Lohr KN, PignoneMP. Literacy and health outcomes: a systematic review ofthe literature. J Gen Intern Med 2004; 19: 1228–39.

64 Goodwin PJ, Sridhar SS. Health-related quality of life incancer patients – more answers but many questions remain.J Natl Cancer Inst 2009; 101: 838–9.

65 Adams RJ, Stocks NP, Wilson DH et al. Health literacy – anew concept for general practice? Aust Fam Physician2009; 38: 144–7.

66 Amalraj S, Starkweather C, Nguyen C, Naeim A. Healthliteracy, communication, and treatment decision-making inolder cancer patients. Oncology (Williston Park) 2009; 23:369–75.

67 Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS.Cancer patients’ perceptions of their disease and its treat-ment. Br J Cancer 1988; 58: 355–8.

68 Scott TL, Gazmararian JA, Williams MV, Baker DW.Health literacy and preventive health care use amongMedicare enrollees in a managed care organization. MedCare 2002; 40: 395–404.

69 Dolan NC, Ferreira MR, Davis TC et al. Colorectal cancerscreening knowledge, attitudes, and beliefs among veter-ans: does literacy make a difference? J Clin Oncol 2004;22: 2617–22.

70 Garbers S, Chiasson MA. Inadequate functional healthliteracy in Spanish as a barrier to cervical cancer screeningamong immigrant Latinas in New York City. Prev ChronicDis 2004; 1: A07.

71 Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL,Garcia P. The association of health literacy with cervicalcancer prevention knowledge and health behaviors in amultiethnic cohort of women. Am J Obstet Gynecol 2002;186: 938–43.

72 Beardsley E, Jefford M, Mileshkin L. Longer consent formsfor clinical trials compromise patient understanding: sowhy are they lengthening? J Clin Oncol 2007; 25: e13–4.

73 Wilson FL. Measuring patients’ ability to read and com-prehend: a first step in patient education. Nursingconnec-tions 1995; 8: 17–25.

74 Communicating with patients who have limited literacyskills. Report of the National Work Group on Literacy andHealth. J Fam Pract 1998; 46: 168–76.

75 Guidry JJ, Fagan P, Walker V. Cultural sensitivity andreadability of breast and prostate printed cancer educationmaterials targeting African Americans. J Natl Med Assoc1998; 90: 165–9.

76 Han H-R, Lee H, Kim MT, Kim KB. Tailored lay healthworker intervention improves breast cancer screening out-comes in non-adherent Korean–American women. HealthEduc Res 2009; 24: 318–29.

77 Juraskova I, Butow P, Lopez AL et al. Improving informedconsent in clinical trials: successful piloting of a decisionaid. J Clin Oncol 2007; 25: 1443–4; author reply 44.

78 Holmes-Rovner M, Stableford S, Fagerlin A et al.Evidence-based patient choice: a prostate cancer decisionaid in plain language. BMC Med Inform Decis Mak 2005;5: 16.

79 Jefford M, Moore R. Improvement of informed consentand the quality of consent documents. Lancet Oncol 2008;9: 485–93.

80 Khankari K, Eder M, Osborn CY et al. Improving colorec-tal cancer screening among the medically underserved: apilot study within a federally qualified health center. J GenIntern Med 2007; 22: 1410–4.

81 US Department of Health and Human Services, Officeof Disease Prevention and Health Promotion (2010).National Action Plan to Improve Health Literacy. Wash-ington, DC: Author.

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