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Keywords:

  • health literacy;
  • neoplasm;
  • patient education as topic;
  • patient-centered care;
  • physician-patient relation

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SEARCH STRATEGY AND SELECTION CRITERIA
  5. FUTURE RESEARCH
  6. REFERENCES

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


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SEARCH STRATEGY AND SELECTION CRITERIA
  5. FUTURE RESEARCH
  6. REFERENCES

There have been significant changes in the delivery of health care over the last few decades. Among these has been a shift to a more patient-centered approach requiring effective partnerships between health-care providers and patients.1–4 Patient-centered health care implies that information and resources be tailored to individual patients' understanding of health information and their ability to navigate the health system, also known as “health literacy”. Patients are often required to make important decisions about disease prevention, screening and treatment based on information provided by health professionals. New technologies, a shift to outpatient care, strains on the health care system and an increase in treatment choices have inevitably made the health system more complex and fragmented.1,2 These changes create significant challenges for patients in making decisions about their health care. This may be especially important in the oncology setting due to the high disease burden, the availability of cancer screening programs, the complexity of multimodal therapies and the emphasis on cancer clinical trials. Therefore, the aim of this article is to discuss the definition of health literacy, its assessment and prevalence, and the impact of health literacy on cancer care, as well as strategies available to support patients with poor health literacy.

SEARCH STRATEGY AND SELECTION CRITERIA

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SEARCH STRATEGY AND SELECTION CRITERIA
  5. FUTURE RESEARCH
  6. REFERENCES

Data for this review were identified by searches of Medline, PsychInfo and the Cumulative Index to Nursing and Allied Health Literature using combinations of the search terms: “health literacy”, “cancer”, “physician–patient relations” and “test of functional health literacy”. A total of 98 abstracts were initially identified. Review articles and abstracts not related to cancer care were excluded, with a total of 47 articles remaining for review. Additionally, the reference lists of retrieved articles were reviewed. Only articles published in English were included. All articles published up until October 2010 were included in the review.

Definition of health literacy

Health literacy is a relatively new concept in clinical practice. The term was originally coined in 1974, though it has received significant attention only in the last decade.5 One of the more widely used definitions is “the capacity to obtain, process and understand health information and services to make sound health decisions”.6 According to the same report by the United States Institute of Medicine, general literacy skills form the basis of a person's health literacy, with health literacy being the active mediator between individual skills, including their cognitive abilities, social skills and emotional states, and the health context, for example, the media, government agencies and health-care providers.6 Hence, health literacy is more than just literacy and numeracy skills in the health context. Figure 1a illustrates the framework of health literacy demonstrated above. “Health literacy” is an umbrella term encompassing different aspects of patients' interaction with the health system from the patient's perspective. This includes the ability to communicate, to be involved in clinical care and to access health care.7 A simple yet comprehensive framework of health literacy from the patient's perspective, as illustrated by Nutbeam, divided health literacy into three main aspects, namely functional health literacy, interactive health literacy and critical health literacy, in order of increased complexity.8 Functional health literacy refers to the ability to understand health information provided. Interactive health literacy refers to the capacity to incorporate social skills and functional health literacy skills to assume good health-seeking behaviour. Finally, critical health literacy is about applying both functional and interactive health literacy skills to critically analyse information provided for making decisions about personal health care. Figure 1b shows Nutbeam's framework of health literacy.

image

Figure 1. Models of health literacy showing (a) US Institute of Medicine framework of health literacy6 and (b) Nutbeam's framework of health literacy.8

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Measurement of health literacy

In recognition of the importance of health literacy in clinical practice, the measurement of health literacy has been an area of burgeoning research. Various types of instruments have been developed to measure health literacy, including proxy assessments of health literacy, the direct testing of individual health literacy abilities and self-report of health literacy abilities.9 While a few studies have used proxy measurements of health literacy, such as education level,10,11 numerous instruments that directly test individual health literacy abilities have been developed to specifically measure health literacy.12–14

Self-report measures of health literacy are less often preferred, as patients with poor health literacy are often embarrassed to admit problems in this area.5,15–17 The use of socioeconomic factors as a proxy measurement of health literacy is convenient but may not be an adequate surrogate measure of health literacy. For example, several studies have shown a significant mismatch between education attainment and reading ability.18 Buchbinder et al. reported that, despite the strong association between health literacy and education level, the use of education level alone as a proxy measure of health literacy would have misclassified more than 10% of their survey respondents as having good or limited health literacy.15

A large international study on adult literacy and life skills (ALLS) coordinated by Statistics Canada and the Organization for Economic Co-operation and Development had a specific domain measuring health literacy in its purpose-built instrument.19 Other direct health literacy testing tools that have been developed include the rapid estimate of adult literacy in medicine (REALM), which measures a person's ability to correctly pronounce common medical words and lay terms14 and the test of functional health literacy in adults (TOFHLA), derived from hospital materials to assess reading comprehension and numeracy skills.12 Given that the TOFHLA takes up to 22 min to administer, compromising 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 valid test of health literacy, with good criterion validity compared to the TOFHLA and REALM.13

Other direct testing instruments, like the newest vital sign20 and less robust instruments using screening questions to identify patients with poor health literacy have been developed.8,21 These instruments tend to be simple and can be administered quickly, potentially allowing their use in routine clinical practice. However, they lack sensitivity and specificity when compared to the TOFHLA, which has been regarded as a standard for assessment of health literacy.22 Despite the widespread use of TOFHLA as an instrument, there is a lack of consensus on the preferred instrument to measure health literacy levels accurately.9 Various instruments could be used together. For example, the newest vital sign may be administered as a screening tool and the TOFHLA can be used as a second tool to measure health literacy levels more accurately.

Health literacy is considered to include functional health literacy, interactive health literacy and critical health literacy. However, the TOFHLA has been criticized for measuring only patients' functional health literacy, which includes their reading ability, comprehension and numeracy skills, but not the broader context of health literacy.9 Recent research has demonstrated that there are seven key abilities that people need to be able to utilise health information.8 These are: knowing when to seek health information, knowing where to seek health information, verbal communication skills, assertiveness, literacy skills, the capacity to process and retain information and application skills.8 Several authors have thus suggested that measures of health literacy should assess these domains.9 The health literacy management scale is one measure that seeks to assess health literacy more broadly.23

In addition, a number of self-report measures of health literacy have been developed. One example is the set of brief screening questions, which asks respondents to rate their confidence and difficulty in understanding health information, using a five-point Likert scale.24 In addition, Scales for measuring functional, communicative and critical health literacy was developed to assess the three aspects of health literacy as per Nutbeam's framework.25 However, the use of these instruments has been limited.

Prevalence of suboptimal health literacy

Numerous studies have examined the prevalence of health literacy in various clinical settings as well as at a population level.1,10,14 Variability of measurement methods has contributed to differences in the reported prevalence of limited health literacy. For example, the ALLS study in the US and Australia, using purpose-built questionnaires with a dedicated health literacy component, suggest that significant proportions of the population (30–50%) have limited health literacy.19 In the Australian survey, higher education level was associated with better health literacy scores.19 However, more than 30% of those with a bachelor degree were classified as having poor health literacy.19 Respondents with a bachelor degree generally performed better in the other domains of literacy and numeracy, including prose literacy, document literacy and numeracy. About 20% of those with a bachelor degree had poor prose literacy.19 A similar proportion had poor document literacy and almost a quarter had poor numeracy.19 While several studies have also revealed consistent findings using the TOFHLA, both at a population level and specific clinical settings,17,26–28 a few studies using TOFHLA as the main instrument reported only a modest proportion of the population (5–10%) with limited health literacy.5,15,29,30

The TOFHLA was developed and validated through interviews with native English speakers.12,13 In subsequent research the study groups using TOFHLA were varied. Some investigators included only native English speakers as participants31 while others recruited non-native English speakers as participants, provided they could understand English.5,15,29,32

Despite discrepant findings regarding the prevalence of poor health literacy, the assessment of individual health tasks via the TOFHLA have consistently found that many people struggle with simple health tasks, such as reading and interpreting a prescription label or an appointment card. A cross-sectional survey of 2659 patients in two urban hospitals in the USA found that up to 41.6% of patients could not understand directions for taking medication on an empty stomach and 26% of patients could not comprehend information about when the next appointment is scheduled.26

In addition to population surveys, various cross-sectional surveys in specific disciplines of medicine have been conducted, including rheumatology, general practice, pediatrics and geriatrics.1,15,27,32–34 This has brought about a better understanding of the extent of limited health literacy in specific clinical settings, which may differ due to different patient socioeconomic characteristics and the nature of the illness.35

There has been very limited research exploring health literacy in cancer patients.36–38 Only a few studies have involved cancer patients or cancer survivors, generally studying perceptions of the risk of cancer recurrence or satisfaction with the medical decision-making process.36–38 Previous research on health literacy and cancer has focused mainly on the correlation between the health literacy level and participation in cancer screening programs among non-cancer patients.39–44 A recent study measured the prevalence of health literacy in head and neck cancer survivors with a total laryngectomy.45 However, the study was conducted retrospectively and involved only eight participants. Moreover, previous research on health literacy and cancer has tended to use convenience sampling or targeted only very limited groups, such as elderly people or certain ethnic groups, like African-Americans, who tend to have lower educational levels.30,39–44,46

Associations and consequences of limited health literacy

Poor health literacy could be a result of limited abilities and/or high health literacy demands. Jordan et al. demonstrated that an individual's health literacy is dependent on the relationship between individual capacities, the health-care system and society.7 Hence, besides a person's innate abilities, the complex health-care system and other services in society may make a high demand for health literacy on patients. Numerous studies have shown that patients with poor health literacy tend to have difficulties obtaining, understanding and retaining health information.37,47 Suboptimal health literacy, as measured by the TOFHLA, is an independent risk factor for poorer health outcomes, including increased risk of hospitalization.32,48

Patients' socioeconomic factors, especially old age and a low education level, are strongly associated with lower levels of health literacy.5,12,29,30 One study showed that people without formal education were sevenfold more likely to have limited health literacy than those with formal education.29 According to Helitzer et al., people with a high education level may still have difficulties dealing with health-related information and decisions.49

The association between old age and poor health literacy is particularly important in the cancer setting. This is because 60% of new cancer diagnoses and 70% of cancer deaths involve patients over 65 years old.50 Furthermore, the population is ageing in many developed countries. Several studies have explored the association between health literacy levels and gender, though results have been inconsistent.6,29,51

Poor understanding of health information by cancer patients could negatively impact on patients' distress levels. As a result of poor understanding of health information, patients may feel dissatisfied with their care and have reduced overall well-being.4 In a study of women with early stage breast cancer, patients who felt that they had been inadequately informed were twice as likely to be depressed or anxious than those who felt they were well informed.52 According to Gamble, patients who did not receive adequate information about adverse effects of their treatment or who were expecting only minor adverse effects were likely to suffer greater anxiety than the rest.53 Furthermore, a study of patients with prostate cancer found that those with poorer health literacy tended to associate prostate cancer with death, fear and suffering, without much consideration for the stage and nature of disease.54 Hence, well-informed cancer patients seemed more likely to cope better with their disease than those who are inadequately informed.52

Communication issues that hinder understanding and informed decision-making

Poor communication by physicians may place a high health literacy demand on patients.55 Physicians may use medical jargon or long and complex sentences when communicating with patients.56 In fact, medical terms that are regarded as “plain English” by medical professionals may be challenging for patients with suboptimal health literacy.47 A study by Samora et al. on knowledge of medical vocabulary among patients from a public general hospital reported that only 35% of patients understood the word “orally”, 18% had a good understanding of the word “malignant” and 13% understood “terminal”.57 Kilbridge et al. sought understanding of terms commonly used in prostate cancer and found that less than 50% of men with prostate cancer understood common terms used in written materials such as “erection” and “impotent”.56 Moreover, only 25% of patients understood “bowel habits” and a mere 5% of patients understood “incontinence”.56 Doctors may be unaware of the prevalence of low health literacy in the community and may fail to recognize that patients do not understand because they lack the capacity to learn,58 and thus place a high demand for health literacy on patients when communicating with them.

A study on understanding of informed consent in cancer patients seeking treatment found that only 60% of them could recall the purpose and nature of the suggested treatment procedure one day after the information was explained to them.59 When discussions include an initial cancer diagnosis or when bad news is expected, some patients are then unable to absorb further information, as their emotional responses may interfere with understanding of health information.60 Ineffective communication between patients and health professionals could result in patients turning to alternate sources of information. A common practice by patients with low health literacy is to learn about cancer from the previous experiences of family members and friends, who may have advanced stage cancer.55 Furthermore, they struggle to clarify their concerns about cancer with health care professionals.47,55 A US population-based survey reported by Gansler et al. revealed several misconceptions about cancer treatment.61 These misconceptions could also affect patients' acceptance of and adherence to their treatment plan. For example, almost half of the respondents in this study believed that treating cancer with surgery could cause it to spread throughout the body.61 In addition, 27% of respondents thought that the medical industry is withholding a cure for cancer from the public in order to increase profits.61 Studies have demonstrated that optimally prescribed pain control treatments can successfully control pain in more than 80% of cancer patients, however Gansler et al. found that 32% of respondents believed (or were uncertain) that pain medications are not effective at reducing the amount of pain that cancer patients suffer.61 Although levels of health literacy were not assessed directly in this survey, the results indicate that some well-established medical facts about cancer were poorly understood by a sizable proportion of the public, suggesting poor health literacy. The education levels of respondents were recorded, with 13% of respondents having less than the average education level of the general US population.61 Respondents with higher education levels had fewer misconceptions, though some misconceptions were still held by those with a high education level.61 This could affect patients' adherence to treatment plans, which may impact negatively on their physical health. For example, a study on communication with cancer patients revealed that those who felt they had not received adequate information were more likely to pursue alternative therapies, such as the Moerman diet.62 In fact, patients with low health literacy were 1.5 to threefold more likely to experience poor health outcomes than those with adequate health literacy.63

Consequences of limited health literacy on cancer care

The concept of health literacy is especially important in the cancer setting, where making decisions on prevention, screening and treatment are becoming more complex.64 Adequate health literacy is central to effective disease prevention and chronic disease self-management.65 Cancer patients are often presented with multiple, complex and individualized options on cancer treatment,66 hence patients with low health literacy may be disadvantaged.

Patients with suboptimal health literacy could have difficulty interpreting information about their disease when communicating with health professionals. Recent studies have revealed that more than 60% of patients overestimated their chances of a cancer cure by 20% or more than that of their doctors.55,66 Mackillop et al. reported that more than half of patients overestimated their chance of cure.67 One-third of patients with metastatic cancer from different primary cancers actually thought that the cancer was localized and one-third of patients receiving treatments with palliative intent believed that they were undergoing curative treatment.67 In this study, 46% of patients did not complete high school education. These patients were significantly more likely to have misconceptions regarding treatment intent than those who completed high school education (50 vs 25%).67 Similarly, 72% of patients without high school qualification overestimated their chances of cure, compared to 38% of those with a high school qualification.67 Despite the associations, misconceptions were still prevalent among patients with higher education levels. As a result of the misconceptions, patients may draw incorrect conclusions from the data provided to them about the chance of their cancer responding to treatment.47 This may lead to unnecessary interventions or under-treatment.38

Participation in cancer screening programs

Studies have revealed that people with poor health literacy are significantly less likely to participate in disease prevention and health promotion programs.68 According to Dolan et al., men with poorer health literacy are 1.5 times less likely to know about colorectal cancer screening tests and 3.5 times more likely to have never heard about colorectal cancer.69 Additionally, they were four times less likely to use a fecal occult blood test for colorectal cancer screening, even if it was recommended by their physicians.69 Garbers et al. examined participation by women in cervical cancer screening and found that women with limited health literacy were significantly less likely to have ever had a cervical cancer screening test.70 Lindau et al. demonstrated that health literacy was a good predictor of knowledge about cervical cancer screening.71 There is evidence that people with suboptimal health literacy obtain less information on cancer prevention or health promotion.47

By contrast, Guerra et al. found that health literacy, as measured by S-TOFHLA, is not an independent predictor of patients' participation in colorectal screening.42 In fact, their physician's recommendation was the main motivation behind patients' decision to participate.42 On the other hand, some patients with low health literacy might make a considered choice not to participate in cancer screening programs on the basis of belief systems and personal values. However, this is unlikely to constitute a large proportion of those with poor health literacy.

Limited participation from people with poor health literacy in cancer screening programs could be due to difficulty understanding risk communication and understanding the effectiveness of preventive approaches. Of course socioeconomic disadvantage, which may be associated with limited health literacy, may result in reduced uptake of cancer screening for a number of reasons, aside from poor health literacy. Patients with lower health literacy may lack the numeracy skills needed to understand and apply information about cancer recurrence risk or the chance of cancer remission.21,38 Lillie et al. revealed that patients with breast cancer with lower health literacy retained significantly less information than patients with higher health literacy when communicating about cancer risks.37

Communication of risk is also made more difficult by the varying use of simple verbal descriptors, such as low or high risk, and numerical descriptions.38 The use of verbal descriptors may be subjective and open to interpretation, and may fail to provide useful information to patients. Brewer et al. found that verbal descriptors were least easily understood among post-treatment breast cancer survivors.38 However, communicating a quantifiable risk is difficult with patients with suboptimal health literacy, although this group of patients may prefer to receive a quantified risk.38,55 Interpretation of risk of cancer recurrence is challenging for patients with poor health literacy, even using a variety of different formats.38 As a result, patients with limited health literacy may be disadvantaged when required to make decisions about participation in cancer screening programs and treatment plans based on the numerical risk information provided.

Treatment decisions

Written health education materials are extensively used in clinical practice to inform patients about their disease, treatment options and available supports. Written consent forms are also widely used but many of these materials tend to be written at a high reading level.72 An assessment of cervical cancer prevention materials revealed that information was written at a reading level at or above grade eleven.49 A study by Wilson reported that average American adults have an education level of grade 12, however their average reading level is estimated to be grade eight or nine.73 Studies have consistently found that patients with limited health literacy may struggle with simple health tasks, including interpreting instructions on a standard appointment card or a standard prescription label.12,15 Patients with suboptimal health literacy could struggle to comprehend the health education materials and treatment consent forms provided to them, thus impairing their health decision-making.

Several groups have made efforts to ensure that cancer education materials match the reading level of the general public. For example, the US National Work Group on Cancer and Literacy advocated the use of plain language for both non-written and written materials for all patients.74 However, a review by Guidry et al. demonstrated that despite the increasing use of plain language, there is still need for improvement.75 Factors that could affect patients' understanding other than language, namely the format of written materials and cultural factors, were often neglected when developing health education materials.75 This is likely to hamper the effective participation of patients with poor health literacy in informed decision-making about their treatment.

Strategies to support people with limited health literacy

Several interventions have been directed at supporting targeted groups of patients with limited health literacy. Han et al. explored the use of lay health workers to provide education, counselling and navigation assistance for breast cancer screening to first generation Korean–Americans.76 There was a significant 30% increase in mammography participation rates after the intervention.76 Various communication practices have been recommended for physicians to enhance patients' understanding from a consultation. These include the use of a plain language decision aid to present information about cancer treatment or screening programs in a simple text and numerical format.77,78 Other studies have advocated the use of a “teach back technique” by asking patients to repeat the information they received during a medical consultation in their own words, to ensure they understood the information.55,79 A study aiming to improve colorectal cancer screening rates among the medically underserved included health literacy training to improve physicians' communication, thus reducing the health literacy demand on the patients.80 A national action plan to improve health literacy was recently announced by the US Department of Health and Human Services, which outlines several goals and strategies to enhance the health literacy of the general public.81

FUTURE RESEARCH

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SEARCH STRATEGY AND SELECTION CRITERIA
  5. FUTURE RESEARCH
  6. REFERENCES

There has been a recent increase in research in the area of health literacy, which includes explorations of the prevalence of health literacy, socioeconomic determinants of health literacy, the impact of limited health literacy and consideration of interventions to assist people with limited health literacy. However, much of this work has focused on the general population or in disciplines of medicine other than cancer. Much of the health literacy research involving cancer patients has been suboptimal; using less robust measurement tools or inadequately selected patient groups. It is crucial to explore the prevalence of limited health literacy in people with different cancer types using robust methods and to determine predictors of poor health literacy in the cancer setting to more easily identify patients who may be disadvantaged in the health-care system. Comprehensive measurement of health literacy remains a challenge due to the broad nature of health literacy. Additional research is needed to develop and validate an instrument that measures health literacy in all its aspects. In addition, the instrument requires quick administration to permit its routine use in clinical practice. Current research on interventions to support patients with limited health literacy has mainly focused on functional health literacy in different clinical settings. Additional research is required to develop more specific interventions to enhance patients' interactive and critical health literacy in order to encourage patients to easily raise any doubt or question with their doctors and subsequently engage actively in discussions about their health status, management plan and outcomes. Further, if the broader context of health literacy is considered, including access to health care and government screening programs, it would be valuable to develop interventions that target and support patients with low health literacy. Above all, the concept of health literacy needs to be incorporated into all aspects of cancer care by all health professionals to ensure adequate support and optimal information provision for all cancer patients with varying health literacy levels, thus enhancing patients' satisfaction, quality of life and adherence to management plans.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SEARCH STRATEGY AND SELECTION CRITERIA
  5. FUTURE RESEARCH
  6. REFERENCES
  • 1
    Eysenbach G, Kohler C. How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews. BMJ 2002; 324: 5737.
  • 2
    Rees CE, Ford JE, Sheard CE. Evaluating the reliability of DISCERN: a tool for assessing the quality of written patient information on treatment choices. Patient Educ Couns 2002; 47: 2735.
  • 3
    Laine C, Davidoff F. Patient-centered medicine. a professional evolution. JAMA 1996; 275: 1526.
  • 4
    Jefford M, Tattersall MH. Informing and involving cancer patients in their own care. Lancet Oncol 2002; 3: 62937.
  • 5
    Barber MN, Staples M, Osborne RH, Clerehan R, Elder C, Buchbinder R. Up to a quarter of the Australian population may have suboptimal health literacy depending upon the measurement tool: results from a population-based survey. Health Promot Int 2009; 24: 25261.
  • 6
    Nielsen-Bohlman L, Panzer A, Kindig DA. Health Literacy: A Prescription to End Confusion. National Academies Press, Washington DC 2004.
  • 7
    Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int 2000; 15: 25967.
  • 8
    Jordan JE, Buchbinder R, Osborne RH. Conceptualising health literacy from the patient perspective. Patient Educ Couns 2009; 79:36–42
  • 9
    Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol 2011; 64: 36679.
  • 10
    Hanchate AD, Ash AS, Gazmararian JA, Wolf MS, Paasche-Orlow MK. The demographic assessment for health literacy (DAHL): a new tool for estimating associations between health literacy and outcomes in national surveys. J Gen Intern Med 2008; 23: 15616.
  • 11
    Hoffman-Goetz L, Meissner HI, Thomson MD. Literacy and cancer anxiety as predictors of health status: an exploratory study. J Cancer Educ 2009; 24: 21824.
  • 12
    Parker RM, Baker DW, Williams MV, Nurss JR. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Intern Med 1995; 10: 53741.
  • 13
    Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. Development of a brief test to measure functional health literacy. Patient Educ Couns 1999; 38: 3342.
  • 14
    Davis TC, Crouch MA, Long SW et al. Rapid assessment of literacy levels of adult primary care patients. Fam Med 1991; 23: 4335.
  • 15
    Buchbinder R, Hall S, Youd JM. Functional health literacy of patients with rheumatoid arthritis attending a community-based rheumatology practice. J Rheumatol 2006; 33: 87986.
  • 16
    Baker DW, Parker RM, Williams MV et al. The health care experience of patients with low literacy. Arch Fam Med 1996; 5: 32934.
  • 17
    Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. Shame and health literacy: the unspoken connection. Patient Educ Couns 1996; 27: 339.
  • 18
    Larson I, Schumacher HR. Comparison of literacy level of patients in a VA arthritis center with the reading level required by educational materials. Arthritis Care Res 1992; 5: 136.
  • 19
    Australian Bureau of Statistics. Health Literacy, Australia Cat. No. 4833.0. Australian Bureau of Statistics, Canberra 2006.
  • 20
    Weiss BD, Mays MZ, Martz W et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med 2005; 3: 51422.
  • 21
    Schwartz LM, Woloshin S, Black WC, Welch HG. The role of numeracy in understanding the benefit of screening mammography. Ann Intern Med 1997; 127: 96672.
  • 22
    Mancuso JM. Assessment and measurement of health literacy: an integrative review of the literature. Nurs Health Sci 2009; 11: 7789.
  • 23
    Buchbinder R, Batterham R, Ciciriello S et al. Health literacy: what is it and why is it important to measure? J Rheumatol 201138: 17917.
  • 24
    Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med 2004; 36: 58894.
  • 25
    Ishikawa H, Takeuchi T, Yano E. Measuring functional, communicative, and critical health literacy among diabetic patients. Diabetes Care 2008; 31: 8749.
  • 26
    Williams MV, Parker RM, Baker DW et al. Inadequate functional health literacy among patients at two public hospitals. JAMA 1995; 274: 167782.
  • 27
    Downey LV, Zun LS. Assessing adult health literacy in urban healthcare settings. J Natl Med Assoc 2008; 100: 13048.
  • 28
    Juzych MS, Randhawa S, Shukairy A, Kaushal P, Gupta A, Shalauta N. Functional health literacy in patients with glaucoma in urban settings. Arch Ophthalmol 2008; 126: 71824.
  • 29
    von Wagner C, Knight C, Steptoe A, Wardle J. Functional health literacy and health-promoting behaviour in a national sample of British adults. J Epidemiol Community Health 2007; 61: 108690.
  • 30
    Donelle L, Arocha JF, Hoffman-Goetz L. Health literacy and numeracy: key factors in cancer risk comprehension. Chronic Dis Can 2008; 29: 18.
  • 31
    Gausman Benson J, Forman WB. Comprehension of written health care information in an affluent geriatric retirement community: use of the test of functional health literacy. Gerontology 2002; 48: 937.
  • 32
    Baker DW, Gazmararian JA, Williams MV et al. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. Am J Public Health 2002; 92: 127883.
  • 33
    Baker DW, Wolf MS, Feinglass J, Thompson JA, Gazmararian JA, Huang J. Health literacy and mortality among elderly persons. Arch Intern Med 2007; 167: 15039.
  • 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: 147580.
  • 35
    Gazmararian JA, Baker DW, Williams MV et al. Health literacy among Medicare enrollees in a managed care organization. JAMA 1999; 281: 54551.
  • 36
    Mohan R, Beydoun H, Barnes-Ely ML et al. Patients' survival expectations before localized prostate cancer treatment by treatment status. J Am Board Fam Med 2009; 22: 24756.
  • 37
    Lillie SE, Brewer NT, O'Neill SC et al. Retention and use of breast cancer recurrence risk information from genomic tests: the role of health literacy. Cancer Epidemiol Biomarkers Prev 2007; 16: 24955.
  • 38
    Brewer NT, Tzeng JP, Lillie SE, Edwards AS, Peppercorn JM, Rimer BK. Health literacy and cancer risk perception: implications for genomic risk communication. Med Decis Making 2009; 29: 15766.
  • 39
    Holmes-Rovner M, Price C, Rovner DR et al. Men's theories about benign prostatic hyperplasia and prostate cancer following a benign prostatic hyperplasia decision aid. J Gen Intern Med 2006; 21: 5660.
  • 40
    Miller DP Jr, Brownlee CD, McCoy TP, Pignone MP. The effect of health literacy on knowledge and receipt of colorectal cancer screening: a survey study. BMC Fam Pract 2007; 8: 16.
  • 41
    von Wagner C, Semmler C, Good A, Wardle J. Health literacy and self-efficacy for participating in colorectal cancer screening: the role of information processing. Patient Educ Couns 2009; 75: 3527.
  • 42
    Guerra CE, Dominguez F, Shea JA. Literacy and knowledge, attitudes, and behavior about colorectal cancer screening. J Health Commun 2005; 10: 65163.
  • 43
    Lindau ST, Basu A, Leitsch SA. Health literacy as a predictor of follow-up after an abnormal Pap smear: a prospective study. J Gen Intern Med 2006; 21: 82934.
  • 44
    Peterson NB, Dwyer KA, Mulvaney SA, Dietrich MS, Rothman RL. The influence of health literacy on colorectal cancer screening knowledge, beliefs and behavior. J Natl Med Assoc 2007; 99: 110512.
  • 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 Otolaryngol 2010; 31: 2931.
  • 46
    Friedman DB, Corwin SJ, Dominick GM, Rose ID. African American men's understanding and perceptions about prostate cancer: why multiple dimensions of health literacy are important in cancer communication. J Community Health 2009; 34: 44960.
  • 47
    Doak CC, Doak LG, Friedell GH, Meade CD. Improving comprehension for cancer patients with low literacy skills: strategies for clinicians. CA Cancer J Clin 1998; 48: 15162.
  • 48
    Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med 1998; 13: 7918.
  • 49
    Helitzer D, Hollis C, Cotner J, Oestreicher N. Health literacy demands of written health information materials: an assessment of cervical cancer prevention materials. Cancer Control 2009; 16: 708.
  • 50
    Cohen HJ. The cancer aging interface: a research agenda. J Clin Oncol 2007; 25: 19458.
  • 51
    Paasche-Orlow MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, Rudd RR. The prevalence of limited health literacy. J Gen Intern Med 2005; 20: 17584.
  • 52
    Fallowfield LJ, Hall A, Maguire GP, Baum M. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. BMJ 1990; 301: 57580.
  • 53
    Gamble K. Communication and information: the experience of radiotherapy patients. Eur J Cancer Care (Engl) 1998; 7: 15361.
    Direct Link:
  • 54
    Dale W. Evaluating focus group data: barriers to screening for prostate cancer patients. Cancer Treat Res 1998; 97: 11528.
  • 55
    Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA Cancer J Clin 2002; 52: 13449.
  • 56
    Kilbridge KL, Fraser G, Krahn M et al. Lack of comprehension of common prostate cancer terms in an underserved population. J Clin Oncol 2009; 27: 201521.
  • 57
    Samora J, Saunders L, Larson RF. Medical vocabulary knowledge among hospital patients. J Health Hum Behav 1961; 2: 10.
  • 58
    Rogers ES, Wallace LS, Weiss BD. Misperceptions of medical understanding in low-literacy patients: implications for cancer prevention. Cancer Control 2006; 13: 2259.
  • 59
    Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Informed consent – why are its goals imperfectly realized? N Engl J Med 1980; 302: 896900.
  • 60
    Maguire P, Faulkner A. Communicating with cancer patients. BMJ 1988; 297: 1610.
  • 61
    Gansler T, Henley SJ, Stein K, Nehl EJ, Smigal C, Slaughter E. Sociodemographic determinants of cancer treatment health literacy. Cancer 2005; 104: 65360.
  • 62
    Pruyn JF, Rijckman RM, van Brunschot CJ, van den Borne HW. Cancer patients' personality characteristics, physician-patient communication and adoption of the Moerman diet. Soc Sci Med 1985; 20: 8417.
  • 63
    Dewalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP. Literacy and health outcomes: a systematic review of the literature. J Gen Intern Med 2004; 19: 122839.
  • 64
    Goodwin PJ, Sridhar SS. Health-related quality of life in cancer patients – more answers but many questions remain. J Natl Cancer Inst 2009; 101: 8389.
  • 65
    Adams RJ, Stocks NP, Wilson DH et al. Health literacy – a new concept for general practice? Aust Fam Physician 2009; 38: 1447.
  • 66
    Amalraj S, Starkweather C, Nguyen C, Naeim A. Health literacy, communication, and treatment decision-making in older cancer patients. Oncology (Williston Park) 2009; 23: 36975.
  • 67
    Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS. Cancer patients' perceptions of their disease and its treatment. Br J Cancer 1988; 58: 3558.
  • 68
    Scott TL, Gazmararian JA, Williams MV, Baker DW. Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Med Care 2002; 40: 395404.
  • 69
    Dolan NC, Ferreira MR, Davis TC et al. Colorectal cancer screening knowledge, attitudes, and beliefs among veterans: does literacy make a difference? J Clin Oncol 2004; 22: 261722.
  • 70
    Garbers S, Chiasson MA. Inadequate functional health literacy in Spanish as a barrier to cervical cancer screening among immigrant Latinas in New York City. Prev Chronic Dis 2004; 1: A07.
  • 71
    Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. Am J Obstet Gynecol 2002; 186: 93843.
  • 72
    Beardsley E, Jefford M, Mileshkin L. Longer consent forms for clinical trials compromise patient understanding: so why are they lengthening? J Clin Oncol 2007; 25: e134.
  • 73
    Wilson FL. Measuring patients' ability to read and comprehend: a first step in patient education. Nursingconnections 1995; 8: 1725.
  • 74
    Communicating with patients who have limited literacy skills. Report of the National Work Group on Literacy and Health. J Fam Pract 1998; 46: 16876.
  • 75
    Guidry JJ, Fagan P, Walker V. Cultural sensitivity and readability of breast and prostate printed cancer education materials targeting African Americans. J Natl Med Assoc 1998; 90: 1659.
  • 76
    Han H-R, Lee H, Kim MT, Kim KB. Tailored lay health worker intervention improves breast cancer screening outcomes in non-adherent Korean–American women. Health Educ Res 2009; 24: 31829.
  • 77
    Juraskova I, Butow P, Lopez AL et al. Improving informed consent in clinical trials: successful piloting of a decision aid. J Clin Oncol 2007; 25: 14434; author reply 44.
  • 78
    Holmes-Rovner M, Stableford S, Fagerlin A et al. Evidence-based patient choice: a prostate cancer decision aid in plain language. BMC Med Inform Decis Mak 2005; 5: 16.
  • 79
    Jefford M, Moore R. Improvement of informed consent and the quality of consent documents. Lancet Oncol 2008; 9: 48593.
  • 80
    Khankari K, Eder M, Osborn CY et al. Improving colorectal cancer screening among the medically underserved: a pilot study within a federally qualified health center. J Gen Intern Med 2007; 22: 14104.
  • 81
    US Department of Health and Human Services, Office of Disease Prevention and Health Promotion (2010). National Action Plan to Improve Health Literacy. Washington, DC: Author.