405
Views
26
CrossRef citations to date
0
Altmetric
Review

Health literacy in solid-organ transplantation: a model to improve understanding

, &
Pages 2325-2338 | Published online: 06 Nov 2018

Abstract

Optimizing wellness and health are the most critical goals for patients post solid-organ transplantation. Low health literacy has important implications for wellness and health, increasing patient risk for negative health outcomes. More than 30% of the general US patient population has low health literacy, and solid-organ transplant recipients (SOTRs) may be especially vulnerable to low health literacy and its adverse impact on health outcomes. A comprehensive literature review was conducted and a model was adapted to better depict factors associated with low health literacy. Based on the Paasche-Orlow and Wolf model of health literacy, the Health Literacy Model in Transplantation (HeaL-T) provides a foundation to visually demonstrate the relationships among variables associated with low health literacy and to develop evidence-based strategies to improve care. The model depicts a number of patient and healthcare level factors associated with health literacy, several of which have bi-directional or reciprocal relationships, including access and utilization of healthcare, provider-patient interaction, and self-management/adherence. The impact of these factors and their relationships to SOTR outcomes are reviewed. The HeaL-T represents an important step in developing holistic understanding of the complexity of health literacy in SOTRs and offers clinicians a base from which to design strategies to mitigate adverse health effects including increased hospitalizations, graft failure, and mortality.

Introduction

Health literacy is defined by the Centers for Disease Control and Prevention as “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.”Citation1 The World Health Organization further defines health literacy as “cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand, and use information in ways which promote and maintain good health.”Citation2 Health literacy includes the ability to read and understand medical information; properly complete medical forms; interpret numbers such as medication dosage and lab values; communicate effectively with providers; and properly adhere to medication regimens.Citation3,Citation4 Additionally, consideration of health literacy should encompass the task an individual is being asked to accomplish and the complexity of that task. Several measures have been developed to gage health literacy status, for example the Test of Functional Health Literacy in Adults (TOFHLA), Newest Vital Sign (NVS), and Rapid Estimate of Adult Literacy in Medicine (REALM). Basic or below basic health literacy (referred to as low health literacy) has been noted in as much as 36% of adults living in the United States, with intermediate health literacy in 53% and proficient health literacy in only 12%.Citation5

Among solid-organ transplant recipients (SOTRs), studies have noted low health literacy in anywhere from 9% to 72%.Citation4,Citation6Citation10 Moreover, health literacy varies depending on factors such as instrumentation, geographic location/environment, and patient characteristics. For example, Chisholm et al found low health literacy, as measured by a modified version of the TOFHLA, in 72% of adult renal transplant recipients served by an outpatient transplant clinic.Citation4 Using the Subjective Health Literacy Screener, Cajita et al reported a low health literacy rate of ~33% in international, multi-center heart transplant recipients.Citation9 Serper et al found low health literacy, as measured by the NVS, in 15% of 105 liver transplant recipients at transplant centers in the Midwestern and Southern United States.Citation10 A large study from the United Kingdom noted low health literacy in 20% of dialysis patients (n=2,621), 15% in those wait-listed for transplant (n=1,959), and 12% in patients who underwent renal transplantation (n=2,262).Citation8 The substantive percentage of pre- and posttransplant populations with low health literacy is concerning given noted associations between health literacy, health outcomes, and increased costs of medical care.Citation3,Citation11Citation14 Friedland reported that low health literacy in the US is associated with $73 billion more spent on healthcare each year.Citation12 Weiss and Palmer found that patients with low health literacy spend four times as much on healthcare each year when compared to those with better health literacy.Citation13

Although the literature is clear on the detrimental impact of low health literacy on posttransplant outcomes (described further in the following section), a gap exists regarding a comprehensive, yet contained, foundational model that may be applied to develop interventions that mitigate the effects of low health literacy. To better depict the spectrum of factors and outcomes associated with health literacy in SOTRs, the purpose of this review was to build on the previous work of Paasche-Orlow and Wolf, and propose the adapted Health Literacy Model in Transplantation or HeaL-T ().Citation15,Citation16 A further objective was to use the HeaL-T as a platform from which to briefly discuss interventions, strategies, and tools to address low health literacy in SOTRs. (Studies from both the general patient population and transplant population were reviewed to describe the factors and relationships depicted as part of the HeaL-T, particularly when literature in the transplant population was scarce.)

Figure 1 Health literacy model in transplantation (HeaL-T): patient-level factors, healthcare-level factors, and outcomes associated with health literacy in the solid-organ transplant population.a,15,16

Notes: Health literacy is associated with several patient-level (eg, age, cognitive function) and caregiver factors. Health literacy also influences, and is influenced by, caregiver and healthcare-level factors including access and utilization of healthcare, provider-patient interaction, and self-management/adherence. These factors may also influence each other; for example, a patient’s adherence may be influenced by an interaction with a provider. Health outcomes are affected by all of these factors that stem from health literacy, and these outcomes can also influence healthcare-level factors as well as health literacy. For example, a patient who does not understand how to take his/her medication (health literacy), and is thus nonadherent (healthcare-level factor), is hospitalized (outcome). During the hospitalization (outcome), the patient has an effective educational interaction with a provider (healthcare-level factor) and develops an understanding of why and how to take his/her medication (health literacy). Going forward, the patient’s adherence increases and his/her outcomes improve. The HeaL-T is adapted with permission from Paasche-Orlow MK, Wolf MS. The causal pathways linking health literacy to health outcomes. Am J Health Behav. 2007;31(Suppl 1):S19–S26.Citation15 aStudies from both the general population and transplant population were reviewed, particularly when literature in the transplant population was scarce.
Figure 1 Health literacy model in transplantation (HeaL-T): patient-level factors, healthcare-level factors, and outcomes associated with health literacy in the solid-organ transplant population.a,15,16

Posttransplant outcomes affected by health literacy

Low health literacy is consistently associated with negative patient outcomes in the kidney disease and transplant literature. For example, prior studies among kidney transplant recipients found that lower health literacy was associated with increased serum creatinine levels, an indicator of renal dysfunction.Citation7,Citation17 In a recent systematic review of health outcomes and health literacy in chronic kidney disease patients (4,367 non-dialysis, 13,202 dialysis, 390 transplant, and 341 unspecified), low health literacy was associated with increased risk of mortality, emergency department use, and hospitalization.Citation14 A study of liver transplant recipients conducted by Serper et al noted that increased treatment knowledge, which was associated with better health literacy, resulted in a 15% reduction in posttransplant hospitalization (incidence rate ratio [IRR]=0.85, 95% CI=0.74–0.97).Citation10 Serper et al also found that low health literacy was associated with medication tradeoffs (defined as choosing between “spending money on medications vs other essential expenses”) among kidney and liver transplant recipients, which in turn increased risk of hospitalization (relative risk [RR]=1.64, 95% CI=1.14–2.35).Citation18 Miller-Matero et al reported that SOTRs with low health literacy were more likely to be readmitted to hospital after transplant as well as experience graft failure.Citation19 Finally, and perhaps most alarmingly, Cavanaugh et al found that end-stage renal disease patients with limited health literacy had higher mortality risk than those with adequate health literacy (HR=1.54, 95% CI=1.01–2.36).Citation20 See for a summary of posttransplant outcomes associated with health literacy.

Patient-level factors associated with health literacy

Patient-level variables depicted in the HeaL-T ( and ) and explored in the following sections represent both modifiable and non-modifiable factors associated with health literacy. Improved understanding of these factors may assist healthcare professionals in identifying SOTRs at high risk for low health literacy. Interventions are unlikely to directly impact most patient-level factors, particularly non-modifiable demographics such age and race. However, healthcare providers and organizations can promote practices that optimize outcomes in patients with low health literacy and close the gap (disparities) that exist across these factors.

Table 1 Relationships between patient-level factors and health literacy

Although addressed individually in this review, it should be remembered that patient factors often intersect and exist within a broader context that influences health literacy and, in turn, posttransplant functioning. Often one variable, such as advanced age, may serve as a proxy or signifier for an underlying issue, such as cognitive deterioration. Exploring various intersections is beyond the scope of this review, but they should be considered and evaluated as part of health literacy assessment.

Age and race/ethnicity

In general, older age has consistently been associated with low health literacy, and some studies describe those 65 years and older as being particularly affected.Citation4,Citation5,Citation21Citation26 Regarding race/ethnicity, multiple US studies have demonstrated a consistent pattern of low health literacy among racial/ethnic minorities including Hispanic and African American groups.Citation5,Citation7,Citation20,Citation21,Citation23,Citation27,Citation28 In contrast, Whites and Asian/Pacific Islanders were found to have higher rates of adequate health literacy.Citation5,Citation17,Citation23 For example Miller-Matero et al, in their study of health literacy and cognitive function in patients evaluated for transplant, found that White patients (n=260) had higher health-related reading ability than Black patients (n=94).Citation27

Language

Among US SOTRs, English as primary language has been linked to health literacy. Kidney transplant recipients who speak English as their primary language have higher health literacy than those who do not.Citation17 Lower health literacy is also seen in both renal failure and kidney transplant patients who primarily speak Spanish.Citation6 Similar findings are reported in the general patient population. As noted in the National Assessment of Adult Literacy, speaking only English in the home before starting school is associated with higher health literacy than speaking other languages, or other languages plus English.Citation5

Culture and environment

In addition to primary language, various aspects of an individual’s culture may play a role in health literacy and influence the ability to understand and follow instructions of healthcare providers.Citation29 These aspects include but are not limited to:Citation29Citation31

  1. Health beliefs

  2. Religion/spirituality

  3. Familism vs individualism, defined as prioritizing family vs the individual

  4. Time orientation, defined as a cultural preference for thinking with a focus on the past, present, or future

  5. High context (culture emphasizes developing deeper and longer-term group connections that facilitate implicit communication and nonverbal cues) vs low context (culture in which relationships/connections are often more superficial and task- or goal-oriented, with greater emphasis on explicit communication).

According to Shaw et al, “cultural variation can be seen in beliefs about disease etiology, appropriate treatments, proper self-care and preventive treatment, human physiology, and appropriate doctor and patient conduct.”Citation32 Singleton and Krause further explain that “patients from cultural minority groups may be more subjected to the effects of low health literacy than patients from the dominant culture because of interactions between literacy, cross-cultural communication barriers including language, and the experience of bias.”Citation29 For example, patients may experience lack of trust in healthcare organizations and professionals due to historical patterns of mistreatment.Citation29,Citation33 Likewise, they may be overly trustful or deferential to healthcare organizations and/or professionals, viewing the organization’s brand/reputation as equivalent to optimal patient care and the healthcare professional as the “expert”; as a result, patients may not actively participate in their own healthcare. Patients may also wish to avoid conflicts with healthcare professionals as “authority” figures and therefore may not fully engage with providers.

Prior studies suggest that cultural differences may affect knowledge, access, and utilization of healthcare services.Citation32,Citation33 In a well-documented example, immigrant women (particularly those from Asian backgrounds) were less likely than native-born women to utilize cervical cancer screening services; further, increased mainstream acculturation was associated with better reproductive health knowledge.Citation34Citation37 Identified barriers to care in these studies included lack of: disease state and screening knowledge/awareness, female healthcare professionals, and culturally sensitive interventions. Cultural background and beliefs may also influence care options such as receiving blood transfusions as well as various aspects of transplantation such as willingness to participate in deceased and/or living organ donation.Citation38 Jernigan et al, in a qualitative study among American Indian/Alaska Native college students, found that many participants supported organ donation though it conflicted with cultural beliefs regarding burial.Citation39 However, participants also expressed mistrust of the healthcare system, which may act as a barrier to donation. Transplant healthcare providers should therefore be conscious of how culture may affect not only the health literacy levels of transplant candidates, recipients, and potential donors, but also how these individuals approach and interact with the healthcare system.

Like culture, environmental factors may also be related to health literacy levels.Citation40,Citation41 These factors are wide-ranging and examples include public policies, health promotion programs, neighborhood crime rates, education system, media exposure, social media, and pollution.Citation40 Although currently lacking, future research should consider the relationship between environmental factors and health literacy in the transplant population.

Socioeconomic factors

Socioeconomic factors, namely income/poverty status, employment, and education level, play a role in health literacy. Gordon and Wolf noted an association between low income and low health literacy in renal transplant recipients.Citation7 Regarding employment status, Taylor et al found that patients who were on dialysis, wait-listed for transplantation, or receiving kidney transplantation all had lower health literacy if they were unemployed.Citation8 Cajita et al also found that unemployment was associated with low health literacy in heart transplant recipients.Citation9

Given the logical link between education and health literacy status, it is unsurprising that the literature examining this factor is extensive and definitive. In patients referred for transplant, both limited health-related reading ability and health-related math ability were associated with fewer years of education.Citation27 This is consistent with Dageforde et al who noted that renal transplant recipients (n=255) with fewer years of education were more likely to have lower health literacy (OR=0.768, 95% CI=0.669–0.882).Citation22 Escobedo and Weismuller found that among a small sample of dialysis patients and renal transplant recipients (n=44), 100% of patients with an elementary or middle school-level education and approximately 53% of patients with a high school-level education were classified as “high likelihood” or “possibility” of limited (low) health literacy compared to ~21% of patients with a college-level education.Citation6

The literature is thus consistent that transplant/chronic kidney disease patients with greater socioeconomic vulnerability – unemployed, lower income/living in poverty, and lower education level – are at greater risk of low health literacy.

Health insurance status

Literature examining the relationship between health insurance status and health literacy in the transplant population is scarce-to-nonexistent, but studies in the general patient population are informative. Sarangarm et al found that individuals with government insurance were more likely to have low health literacy compared to those with private insurance.Citation42 The National Assessment of Adult Literacy similarly found that patients who had private or military-provided health insurance had higher health literacy than patients who received Medicare/Medicaid or were uninsured.Citation5 Levy and Janke also found what they described as a “marginally” significant (P=0.079) trend suggesting that adults aged 50 years or older with low health literacy were more likely to be uninsured.Citation23 In contrast, Baker et al found that patients with Medicare or private insurance were more likely to have low health literacy when compared to patients on Medicaid or patients with no insurance.Citation21 Based on a preponderance of the available evidence, the literature regarding health insurance status and how it affects health literacy is suggestive that public insurance or lack of insurance may be linked with lower health literacy than private insurance. Further study is warranted, especially in the transplant population.

Donor status

Although the body of literature examining donor status and its effect on health literacy status is small, the existing research suggests deceased donor status may be associated with low health literacy. In a study of kidney transplant recipients and donors (n=360), Dageforde et al found that while 10% overall had low health literacy, 6% of living donors and 9% of living donor recipients had low health literacy compared to 14% of deceased donor recipients.Citation22 Taylor et al also found that recipients of deceased donor transplantation had significantly higher prevalence of low health literacy than living donor recipients.Citation8

We postulate the association between health literacy and donor status may be due to the more exhaustive and complex evaluative process involved with living donation. As Dageforde et al explain, consent documents for living donation are generally written at a college freshman level and difficult to navigate without assistance and/or a higher literacy level.Citation22 The investigators further state “low and moderate health literacy transplant candidates may recruit potential donors with a similar level of health literacy who in turn have challenges navigating and completing the donation process.”Citation22 The implication: candidates with low health literacy select living donors unable to complete the donation process, and are thus left to accept deceased donor transplants.

Comorbidities/mental and physical health

Effects of the patient’s underlying disease state may impact his/her ability to understand and process information, communicate, and participate in treatment. Multiple studies also support that physical/mental health status as well as comorbidities may be related to health literacy among end-stage disease patients and SOTRs. In the end-stage renal disease population, Cavanaugh et al found that patients with a lower serum albumin were more likely to have low health literacy.Citation20 Additionally, Taylor et al found that in dialysis patients and transplant recipients, a higher number of comorbidities, depression, and psychosis were associated with lower health literacy.Citation8 The findings regarding comorbidities and psychosis were similar in patients who were wait-listed for transplant, though depression was not related to lower health literacy for those wait-listed.Citation8 In a later systematic review, Taylor et al also noted lower health literacy in chronic kidney disease patients with higher blood pressure and atherosclerotic events.Citation14 Specifically in the transplant population, Cajita et al found that lower level of physical activity was associated with lower health literacy among heart transplant recipients,Citation9 and Demian et al reported lower health literacy in renal transplant recipients with higher levels of depression.Citation17

Health beliefs and attitudes

Several studies in chronic disease state populations have established a link between low health literacy and erroneous or suboptimal health and/or medication beliefs and attitudes.Citation43Citation48 For example, asthma and chronic obstructive pulmonary disease patients with low health literacy were more likely to express erroneous beliefs, misconceptions, or concerns about their illness and/or related medications.Citation44Citation46 Soones et al and Kale et al noted a link between low health literacy, illness/medication beliefs and concerns, and medication nonadherence, and recommended developing interventions to address both low health literacy and disease/medication beliefs to facilitate better medication adherence.Citation44,Citation46 In one of the few available studies in transplant, Jones et al found that among patients wait-listed for kidney transplant (n=41), adequate health literacy was associated with strong beliefs concerning the necessity of medications and greater confidence about taking posttransplant medications.Citation49 The existing evidence suggests an important relationship between health literacy and health beliefs that, in turn, has a considerable effect on self-management behaviors such as medication adherence (discussed later).

Verbal ability, cognitive functioning, and vision/hearing

Health literacy may be affected by patient verbal ability, cognitive functioning, and/or vision/hearing acuity, particularly in older adults.Citation23,Citation50,Citation51 In the context of health literacy, verbal ability refers to the “ability to speak and listen that facilitates exchanging, understanding, and interpreting of health information for health-decision making, disease management, and navigation of the healthcare system.”Citation52 In a sample of older adults aged 55–74 years, Serper et al found that limited cognitive function, including verbal ability, was significantly associated with lower health literacy.Citation53 The findings of Wolf et al were similar.Citation54 In addition to verbal ability, cognitive functions include memory, problem-solving, reasoning, mental flexibility, the ability to learn new information, and computing, among other skills and processes needed for SOTRs to fully comprehend and participate in their own healthcare. Issues with cognitive functioning may be exacerbated by vision and/or hearing impairments.Citation50,Citation51 Speros suggested that visual/hearing limitations may compromise an individual’s ability to fully understand or grasp information provided by the healthcare professional.Citation50 Wallhagen et al also reported that visual and hearing impairments have significant negative effects on functioning (eg, physical abilities, mental health) among adults ages 50 years and older, which in turn may impact health literacy.Citation55

Previous research suggests that cognitive limitations are a concern in the transplant population. For example, Bürker et al found that almost 40% of a sample of adult heart transplant recipients displayed cognitive impairments, as did more than 70% of Cohen et al’s sample of lung transplant recipients.Citation56,Citation57 Miller-Matero et al found that limited reading ability was associated with cognitive impairment among patients referred for transplant.Citation27 Additionally, Patzer et al reported that both lower health literacy and greater cognitive impairment were significantly associated with more limited treatment knowledge in kidney transplant recipients.Citation58

Marital status

Although Toçi et al found no significant differences between health literacy levels in married adults vs single adults,Citation25 other studies specifically among SOTRs disagree.Citation7,Citation17 For example, in renal transplant recipients, Demian et al found that being married was associated with higher health literacy,Citation17 while Gordon and Wolf found that being single was associated with lower health literacy.Citation7 Marital status and how it affects health literacy thus warrants consideration in the transplant population. Marital status should also be examined in the context of support person/caregiver health literacy (discussed in the following section), as spouses/partners often serve as patients’ caregivers.

Support person/caregiver health literacy

Thus far we have focused our discussion on patient-level factors associated with health literacy. However, as suggested by Dageforde and Cavanaugh, comprehensive assessment of an SOTR’s health literacy should also consider the health literacy level of their support person/caregiver (as applicable).Citation16 Caregivers provide critical support and assistance to patients with chronic medical conditions such as transplantation, including self-management support, “accessing/understanding health information, communicating with healthcare providers, coordinating support services, and participating in health decision-making and problem-solving.”Citation59 As an example, Chisholm-Burns et al found a significant, positive relationship between social support (which shares aspects of caregiving) and immunosuppressant therapy adherence among adult renal transplant recipients.Citation60 For these reasons, support person/caregiver health literacy was included in the HeaL-T (). Of concern, previous studies have reported that caregivers’ health literacy and/or information needs regarding patient condition and treatment may be overlooked or marginalized by healthcare practitioners, even though the relationship between patient and caregiver plays an important role in patient outcomes.Citation61Citation64

A systematic review conducted by Yuen et al found that low health literacy in caregivers of patients with chronic conditions may be as high as 52%.Citation59 Other studies have found variable levels of literacy among caregiver-patient dyads. Patients and caregivers may influence each other other’s health literacy, whether through exchange of information, lack of this exchange, or miscommunication; the HeaL-T notes this bi-directional relationship. In a study of elderly Hispanic patients and their caregivers, Garcia et al found that the largest percentage of dyads, 41%, consisted of patients with low health literacy and caregivers with adequate health literacy, while 7% of dyads had patients with adequate health literacy but caregivers with low health literacy.Citation28 Among dyads in which patients and caregivers had the same level of literacy, 28% had adequate health literacy and 24% had low health literacy.Citation28 In a study of Italian patients with heart failure and their caregivers, Della Pelle et al found that most caregivers had adequate levels of health literacy, but those who were older and had lower education levels had the lowest health literacy.Citation65

Findings from the Yuen et al systematic review further suggest that low health literacy in caregivers is associated with increased caregiver burden, poorer patient self-management, and increased use of health services.Citation59 The implication is that caregiver-provided support and assistance to patients may be seriously hindered by low health literacy. As there is a dearth of studies on support person/caregiver health literacy in the transplant literature, additional research is needed to more fully articulate and address the: 1) extent of low health literacy in caregivers of SOTRs; and 2) effects of support person/caregiver health literacy on transplant outcomes.

Healthcare-level factors associated with health literacy

Access and utilization of healthcare

Patients with low health literacy may have difficulty interfacing with health systems in a variety of ways: identifying appropriate healthcare professionals, scheduling appointments for various medical tests, and arranging payment for treatment, among others. Likewise, the health system’s infrastructure, organization, and modes of communication may not accommodate the needs of patients with varying levels of health literacy. Owing to issues such as health system complexity, communication and cognitive barriers, and medical condition(s) and overall health, patients in the general population are at risk of decreased healthcare access and inappropriate or inadequate utilization of healthcare services due to low health literacy.Citation23,Citation24,Citation34,Citation35,Citation66,Citation67

Consistent with this pattern, several studies provide significant evidence that low health literacy may severely hamper access to transplant. In an assessment of health literacy status in advanced kidney disease patients, Taylor et al noted that a lower percentage (12%) of patients in the transplant group had low health literacy than in the wait-listed group (15%) and dialysis group (20%), suggesting patients with lower health literacy may be less likely to advance to renal transplantation.Citation8 Taylor et al also conducted a systematic review examining health literacy and outcomes in chronic renal disease and found that longer time to transplantation referral was linked to low health literacy.Citation14 Likewise, Grubbs et al, in a study of health literacy and access to renal transplantation in hemodialysis patients aged 18–75 years (n=62), found that patients with low health literacy were less likely to be referred for transplant evaluation than those with adequate health literacy.Citation68 Miller-Matero et al demonstrated that patients with lower health literacy and impaired cognitive ability were less likely to be listed for transplant and more likely to be removed from listing compared to patients who had adequate health literacy and cognitive function.Citation19 Additionally, Kazley et al indicated that lower health literacy was significantly associated with lower likelihood to be listed for and receive transplantation.Citation69

The association between low health literacy and decreased access to transplant is concerning, due to transplantation being a preferred treatment choice for many.Citation70 As presented in the HeaL-T, diminished access and utilization of health-care services as a result of low health literacy may influence, and be influenced by, provider-patient interactions and self-management capacity. Ultimately, patient outcomes may be negatively affected.

Self-management and adherence

Self-management refers to the ability to complete daily healthcare tasks and adhere to the treatment regimen, which are necessary to ensure optimal health outcomes.Citation71 This ability may be influenced by external factors (eg, health education, media, support technology, and other resources) and internal factors such as knowledge, skills and beliefs, problem-solving ability, motivation, participation in decision-making, and self-efficacy ().Citation15,Citation16 Defined as an individual’s belief in their capacity to perform behaviors needed to achieve specific goals, self-efficacy may be considered the foundation of self-management and is associated with SOTR self-management tasks such as physical activity and medication adherence.Citation43,Citation72Citation77

Previous studies suggest patients with low health literacy suffer deficits in self-management and reduced medication adherence compared to patients with adequate health literacy. In their systematic review of health literacy in the general patient population, Berkman et al found that low health literacy was associated with reduced ability to understand/interpret labels and health messages as well as reduced ability to appropriately take medications.Citation3 Similarly, Geboers et al found that self-management abilities were reduced in individuals with lower health literacy when controlled for age.Citation78 Among 784 adults aged 55–74 years, Wolf et al found that low health literacy was associated with poor performance on healthcare tasks such as dosing and organizing medication and healthcare problem-solving.Citation54

Disappointingly, research delving into the relationship between health literacy and self-management (other than medication adherence) in the transplant population was difficult to locate. However, as previously described, Jones et al found that patients wait-listed for renal transplantation with higher health literacy had increased understanding of the necessity of their posttransplant immunosuppression therapy as well as increased confidence about taking medications posttransplant – qualities necessary for proper self-management.Citation49

Medication adherence

Medication adherence is the one aspect of posttransplant self-management for which considerable evidence exists regarding the relationship with health literacy, and therefore it is specifically displayed in the HeaL-T (). Health literacy is consistently linked to adherence in general patient populations, and studies in the transplant population are consistent with these findings.Citation3,Citation58,Citation79,Citation80 Chisholm et al developed the Immunosuppressant Therapy Barrier Scale© (ITBS©) to assess adherence barriers among SOTRs, and noted that increased barriers are associated with nonadherence.Citation81 Several barriers enumerated in the ITBS© reflect aspects of health literacy including understanding of why medications are needed and how and when to take medications.Citation81 Serper et al found that lower health literacy in liver transplant recipients was associated with greater nonadherence to medication regimens which included immunosuppressants, other transplant-related medications, and medications to treat comorbidities.Citation10 Serper et al also found that patients with low health literacy were more likely to report a medication tradeoff and, in turn, those with medication tradeoffs were more likely to report medication nonadherence.Citation18 Demian et al reported similar results, noting that low health literacy was associated with medication nonadherence in kidney transplant recipients.Citation17 These cumulative findings are troubling due to the relationship between medication nonadherence and negative health outcomes in transplant recipients, including increased graft rejection, graft failure, and mortality.Citation4,Citation8,Citation82Citation85

Healthcare provider-patient interaction

As suggested in the HeaL-T (), reciprocal relationships exist among access to care, self-management/adherence, and healthcare provider-patient interactions. As with the first two healthcare-level factors, interactions and communication between healthcare providers and patients may be negatively impacted by low health literacy and vice versa, as interactions may in turn influence health literacy. Paasche-Orlow and Wolf noted that healthcare providers often do not use interviewing techniques designed for utilization with patients who have low levels of health literacy.Citation15 As a result, providers may not deliver information and instructions in ways that patients can understand and process. Patients who do not fully understand healthcare information and instructions may not ask pertinent follow-up questions, appropriately complete self-management tasks, or be able to successfully navigate the healthcare system, among other consequences.

Interactions with patients may also be influenced by various provider characteristics such as communication style, experience level, and treatment milieu. As an example, provider communication that supports patient autonomy is associated with higher quality patient decisions (in which “higher quality” is defined by having adequate time, information, and involvement in decision-making, satisfaction, and no regrets with the decision).Citation86 Another possible issue is racial/ethnic or gender concordance vs discordance between patient and practitioner. As mentioned previously, patients may prefer same-sex healthcare providers due to cultural or religious mores/tenets, or due to the sensitivity of the particular health issue (eg, female patients may prefer female providers when dealing with reproductive issues). Additionally, racial/ethnic concordance between patient and provider may promote trust and better communication, as providers “from racial and ethnic minority backgrounds may possess culturally specific knowledge, skills, and experience that reduce barriers” to the patient-provider relationship.Citation87Citation90 When discordance exists, depending on the circumstances, patient health literacy may not be appropriately addressed.

The following section explores interventions, strategies, and tools that may improve the quality of provider-patient interactions and address the problem of low health literacy.

Interventions and future developments

Given the relationships noted in the HeaL-T between posttransplant outcomes and health literacy, the application of this model to develop strategies to optimize health outcomes may benefit care. As healthcare professionals, we are challenged to confront the limitations presented by low health literacy and implement strategies to support patients and caregivers through the transplant process, as well as through self-management tasks (eg, medication adherence) necessary for graft survival.

Health literacy of SOTRs and their caregivers should be assessed multiple times before and after transplant, given that literacy levels may vary according to the context or task the patient and/or caregiver is being asked to accomplish. Liang and Brach suggest healthcare providers adopt universal health literacy precautions such as providing easily understandable instructions, asking patients and caregivers to describe how they are going to follow treatment instructions, and offering help filling out healthcare forms.Citation91 Healthcare providers should also improve their own health literacy skills by learning how to identify patients and caregivers with low health literacy, participating in ongoing communication skills building, and utilizing educational strategies such as open-ended questions and Teach-Back in all patients with suspected low health literacy.Citation91Citation94 Open-ended questions allow providers to explore patient understanding beyond simple “yes” or “no” answers. Teach-Back and similar educational methods are “a way of checking understanding by asking patients to state in their own words what they need to know or do about their health,” how they should take their medications, and how they should perform various other tasks and behaviors related to treatment. These methods allow healthcare providers to confirm they have provided explanations and instructions in a manner that patients/caregivers understand, rather than place the onus of confirmation on the patient/caregiver.Citation95

Education provided to patients and caregivers should be simple and easy to understand.Citation91,Citation96 Burke et al suggested that potential transplant candidate education should begin in the primary care setting and be tailored to address the individual’s health literacy level.Citation97 Written materials should avoid medical jargon, be at or below the fifth-grade reading level, presented in large font size, culturally sensitive, and presented in small increments (eg, 3–5 information points at a time).Citation9,Citation22,Citation96,Citation98 Alternate teaching methods/tools might also be useful for individuals with low health literacy such as flash cards, graphics/illustrations, QR-barcoded bottles, animated videos, and online patient portals via which patients can access health information and data, as well as any educational materials posted by providers.Citation9,Citation22,Citation91,Citation94,Citation99,Citation100 Yeung et al examined the effects of a pharmacist-provided intervention in which patients with diabetes, heart failure, and/or hypertension were provided medication and disease education using flashcards written at a first-grade level or below (content also available as online videos using QR-coded medication bottles).Citation99 The flashcards and videos were used to educate intervention patients on medication indications and administration, disease state, and common side effects. The investigators found that following the intervention, patients in the intervention group had significantly greater medication adherence than patients in the control group.Citation99

The use of technology such as computers, smartphones, text messaging, social media platforms, self-management apps, and other technological tools has revolutionized how we learn and communicate, and can provide enormous support to individuals with low health literacy.Citation101 McGillicuddy et al designed and implemented a mobile health intervention, consisting of electronic medication tray (which emitted reminder signals) and text message or email reminders, to improve medication adherence among hypertensive renal transplant recipients.Citation102 They found that the intervention group experienced improved adherence and blood pressure control compared to the control group.Citation102 Gordon et al designed a culturally targeted website regarding living kidney donation and transplantation for use among Hispanics/Latinos, and found that website exposure was associated with increased knowledge scores.Citation103,Citation104 Website content was written at a 5th to 8th grade level and included videos, photographs, factsheets, games, and interactive graphics. In another example, Lam et al conducted a study in which hypertensive patients served by community pharmacies were provided audio-assisted medication instructions in the form of “Talking Pill Bottles.”Citation105 The talking pill bottle allowed pharmacists to record patient-centered counseling messages and instructions that patients could access at any time for guidance on how to take medications. Patients in the intervention arm experienced significantly decreased blood pressure, suggesting this technology can positively impact patient outcomes.Citation105

Although promising, the literature concerning technological interventions to address low health literacy suggests some of these strategies are not more effective than standard care. For example, Harrison et al performed a randomized-controlled trial examining a computer-based education program vs standard teaching methods in SOTRs.Citation106 They found there was no difference in knowledge improvement between the intervention and control groups; however, patient satisfaction did increase in the computer-based education arm.Citation106 Future research should further evaluate the utility of talking pill bottles, text messaging, and similar technologies across SOTR groups to mitigate low health literacy and improve healthcare access, utilization, self-management/adherence, and ultimately health outcomes. As Bonner et al found that younger chronic kidney patients (<60 years old) were more likely than older patients to use internet and mobile phone technology to obtain information about healthcare, research aimed at helping aging populations efficiently use technological interventions would also be advisable.Citation107

Refer to for additional information concerning intervention strategies, tools, and resources for working with SOTRs and caregivers with low health literacy.Citation9,Citation22,Citation91Citation105,Citation108Citation110

Table 2 Intervention strategies, tools, and resources to address low health literacyCitation9,Citation22,Citation91Citation105,Citation108Citation110

Conclusion

In summary, the HeaL-T is a framework for facilitating understanding of the multitude complex factors associated with health literacy in the solid-organ transplant population. Low health literacy increases the likelihood of negative health outcomes among SOTRs, and therefore it is a critical consideration in the care of this population. Health literacy is associated with a number of patient-level factors (eg, demographics, culture, socioeconomic status, cognitive function), healthcare-level factors (access, self-management, provider-patient interactions), and caregiver factors. Consideration of the influence of these various factors may better inform the design and implementation of interventions to address and mitigate the effects of low health literacy. Although some strategies are suggested herein, future research should explore the HeaL-T as a foundation to develop additional interventions to improve outcomes of SOTRs with low health literacy.

Author contributions

Dr Marie A Chisholm-Burns’ specific contributions to this work include: 1) conception of the work; 2) writing and editing the manuscript; 3) final approval of the version to be published; and 4) agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Dr Christina A Spivey’s specific contributions to this work include: 1) conception of the work and participation in the literature search; 2) writing and editing the manuscript; 3) final approval of the version to be published; and 4) agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Mr Logan R Pickett’s specific contributions to this work include: 1) conception of the work and participation in the literature search; 2) writing and editing the manuscript; 3) final approval of the version to be published; and 4) agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Abbreviations

ESL=

English as a second language

HeaL-T=

health literacy model in transplantation

IRR=

incidence rate ratio

ITBS©=

Immunosuppressant Therapy Barrier Scale©

NVS=

Newest Vital Sign

REALM=

Rapid Estimate of Adult Literacy in Medicine

RR=

relative risk

SOTRs=

solid-organ transplant recipients

TOFHLA=

Test of Functional Health Literacy in Adults

Disclosure

The authors report no conflicts of interest in this work.

References

  • Centers for Disease Control and PreventionWhat is health literacy? Available from: https://www.cdc.gov/healthliteracy/learn/index.htmlAccessed June 28, 2018
  • World Health OrganizationTrack 2: health literacy and health behavior Available from: http://www.who.int/healthpromotion/conferences/7gchp/track2/en/Accessed June 6, 2018
  • BerkmanNDSheridanSLDonahueKEHalpernDJCrottyKLow health literacy and health outcomes: an updated systematic reviewAnn Intern Med201115529710721768583
  • ChisholmMAFairJSpiveyCAHealth literacy and transplant patients and practitionersPublic Health20071211080080317574640
  • KutnerMGreenbergEJinYPaulsenCThe health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). US Department of EducationWashington, DCNational Center for Education Statistics2006 Available from: https://nces.ed.gov/pubs2006/2006483.pdfAccessed June 28, 2018
  • EscobedoWWeismullerPAssessing health literacy in renal failure and kidney transplant patientsProg Transplant2013231475423448820
  • GordonEJWolfMSHealth literacy skills of kidney transplant recipientsProg Transplant2009191253419341060
  • TaylorDMBradleyJABradleyCATTOM Investigators. Limited health literacy in advanced kidney diseaseKidney Int20169068569527521115
  • CajitaMIDenhaerynckKDobbelsFHealth literacy in heart transplantation: Prevalence, correlates and associations with health behaviors-Findings from the international BRIGHT studyJ Heart Lung Transplant201736327227927773449
  • SerperMPatzerREReesePPMedication misuse, nonadherence, and clinical outcomes among liver transplant recipientsLiver Transpl2015211222825312406
  • HowardDHGazmararianJParkerRMThe impact of low health literacy on the medical costs of Medicare managed care enrolleesAm J Med2005118437137715808134
  • FriedlandRNew estimates of the high costs of inadequate health literacyPfizer Inc. Proceedings of Pfizer Conference Promoting Health Literacy: A Call to Action7–8 October, 1998610Washington, DCPfizer, Inc.
  • WeissBDPalmerRRelationship between health care costs and very low literacy skills in a medically needy and indigent Medicaid populationJ Am Board Fam Med20041714447
  • TaylorDMFraserSDudleyCHealth literacy and patient outcomes in chronic kidney disease: a systematic reviewNephrol Dial Transplant20183315451558
  • Paasche-OrlowMKWolfMSThe causal pathways linking health literacy to health outcomesAm J Health Behav200731Suppl 11926
  • DagefordeLACavanaughKLHealth literacy: emerging evidence and applications in kidney disease careAdv Chronic Kidney Dis201320431131923809283
  • DemianMNShapiroRJThorntonWLAn observational study of health literacy and medication adherence in adult kidney transplant recipientsClin Kidney J20169685886527994867
  • SerperMReesePPPatzerRRThe prevalence, risk factors, and outcomes of medication trade-offs in kidney and liver transplant recipients: a pilot studyTranspl Int20183187087929178601
  • Miller-MateroLRBryceKHyde-NolanMEHealth literacy status affects outcomes for patients referred for transplantPsychosomatics201657552252827231187
  • CavanaughKLWingardRLHakimRMLow health literacy associates with increased mortality in ESRDJ Am Soc Nephrol201021111979198520671215
  • BakerDWParkerRMWilliamsMVClarkWSHealth literacy and the risk of hospital admissionJ Gen Intern Med199813127917989844076
  • DagefordeLAPetersenAWFeurerIDHealth literacy of living kidney donors and kidney transplant recipientsTransplantation2014981889324573114
  • LevyHJankeAHealth Literacy and Access to CareJ Health Commun201621Suppl 1435027043757
  • CutilliCCSimkoLCColbertAMBennettIMHealth literacy, health disparities, and sources of health information in U.S. older adultsOrthop Nurs2018371546529369135
  • ToçiEBurazeriGMyftiuSSørensenKBrandHHealth literacy in a population-based sample of adult men and women in a South Eastern European countryJ Public Health2016381613
  • AlbertiTLMorrisNJHealth literacy in the urgent care setting: What factors impact consumer comprehension of health information?J Am Assoc Nurse Pract20172924224728296227
  • Miller-MateroLRHyde-NolanMEEshelmanAAbouljoudMHealth literacy in patients referred for transplant: do patients have the capacity to understand?Clin Transplant201529433634225604933
  • GarciaCHEspinozaSELichtensteinMHazudaHPHealth literacy associations between Hispanic elderly patients and their caregiversJ Health Commun201318Suppl 125627224093360
  • SingletonKKrauseEMSUnderstanding cultural and linguistic barriers to health literacyOJIN. Online J Issues Nurs2009143 Manuscript 4
  • ChristySMGwedeCKSuttonSKHealth Literacy among Medically Underserved: The Role of Demographic Factors, Social Influence, and Religious BeliefsJ Health Commun2017221192393129125435
  • NeeseBIntercultural communication: high- and low-context cultures Available from: https://online.seu.edu/high-and-low-context-cultures/Accessed June 28, 2018
  • ShawSJHuebnerCArminJOrzechKOrzechKVivianJThe role of culture in health literacy and chronic disease screening and managementJ Immigr Minor Health200911646046718379877
  • MemonATaylorKMohebatiLMPerceived barriers to accessing mental health services among black and minority ethnic (BME) communities: a qualitative study in Southeast EnglandBMJ Open2016611e012337
  • McdonaldJTKennedySCervical cancer screening by immigrant and minority women in CanadaJ Immigr Minor Health20079432333417345152
  • LoftersAGlazierRHAghaMMCreatoreMIMoineddinRInadequacy of cervical cancer screening among urban recent immigrants: a population-based study of physician and laboratory claims in Toronto, CanadaPrev Med200744653654217467782
  • VahabiMLoftersAMuslim immigrant women’s views on cervical cancer screening and HPV self-sampling in Ontario, CanadaBMC Public Health201616186827557928
  • BrottoLAChouAYSinghTWooJSTJstWReproductive health practices among Indian, Indo-Canadian, Canadian East Asian, and Euro-Canadian women: the role of acculturationJ Obstet Gynaecol Can200830322923818364100
  • MorganMKentenCDeedatSDonate Programme TeamAttitudes to deceased organ donation and registration as a donor among minority ethnic groups in North America and the U.K.: a synthesis of quantitative and qualitative researchEthn Health201318436739023249284
  • JerniganMFahrenwaldNHarrisRTsosieUBakerLOBuchwaldDKnowledge, beliefs, and behaviors regarding organ and tissue donation in selected tribal college communitiesJ Community Health201338473474023504267
  • LoriniCIerardiFBachiniLThe antecedents and consequences of health literacy in an ecological perspective: results from an experimental analysisInt J Environ Res Public Health2018154E79829671791
  • RosarioCModesteNdos SantosHAn examination of ecological predictors of health literacy in black college studentsJ Am Coll Health201765642343128617106
  • SarangarmDErnstAHornerRCross-sectional study of the relation of health literacy to primary language and emergency department length of staySouth Med J20171101279680129197317
  • MackeyLMDoodyCWernerELFullenBSelf-management skills in chronic disease management: what role does health literacy have?Med Decis Making20163674175927053527
  • KaleMSFedermanADKrauskopfKThe association of health literacy with illness and medication beliefs among patients with chronic obstructive pulmonary diseasePLoS One2015104e012393725915420
  • FedermanADWolfMSofianouAThe association of health literacy with illness and medication beliefs among older adults with asthmaPatient Educ Couns201392227327823523196
  • SoonesTNLinJLWolfMSPathways linking health literacy, health beliefs, and cognition to medication adherence in older adults with asthmaJ Allergy Clin Immunol2017139380480927555454
  • FedermanADWisniveskyJPWolfMSLeventhalHHalmEAInadequate health literacy is associated with suboptimal health beliefs in older asthmaticsJ Asthma201047662062620636188
  • ShiyanbolaOOUnniEHuangYMLanierCThe association of health literacy with illness perceptions, medication beliefs, and medication adherence among individuals with type 2 diabetesRes Social Adm Pharm20181482483029317189
  • JonesJRosaasenNTaylorJHealth literacy, knowledge, and patient satisfaction before kidney transplantationTransplant Proc20164882608261427788790
  • SperosCIMore than words: promoting health literacy in older adults. OJINOnline J Issues Nurs2009143 Manuscript 5
  • GeboersBUitersEReijneveldSAHealth literacy among older adults is associated with their 10-years’ cognitive functioning and decline – the Doetinchem Cohort StudyBMC Geriatr20181817729558890
  • HarringtonKFValerioMAA conceptual model of verbal exchange health literacyPatient Educ Couns201494340341024291145
  • SerperMPatzerRECurtisLMHealth literacy, cognitive ability, and functional health status among older adultsHealth Serv Res20144941249126724476068
  • WolfMSCurtisLMWilsonEALiteracy, cognitive function, and health: results of the LitCog studyJ Gen Intern Med201227101300130722566171
  • WallhagenMIStrawbridgeWJShemaSJKurataJKaplanGAComparative impact of hearing and vision impairment on subsequent functioningJ Am Geriatr Soc20014981086109211555071
  • BürkerBSGudeEGullestadLCognitive function among long-term survivors of heart transplantationClin Transplant20173112e13143
  • CohenDGChristieJDAndersonBJCognitive function, mental health, and health-related quality of life after lung transplantationAnn Am Thorac Soc201411452253024605992
  • PatzerRESerperMReesePPMedication understanding, non-adherence, and clinical outcomes among adult kidney transplant recipientsClin Transplant201630101294130527447351
  • YuenEYNKnightTRicciardelliLABurneySHealth literacy of caregivers of adult care recipients: A systematic scoping reviewHealth Soc Care Community2018262e191e20627426731
  • Chisholm-BurnsMASpiveyCAWilksSESocial support and immunosuppressant therapy adherence among adult renal transplant recipientsClin Transplant201024331232019694770
  • BevanJLPecchioniLLUnderstanding the impact of family caregiver cancer literacy on patient health outcomesPatient Educ Couns200871335636418372142
  • ChenLXiaoLDde BellisAFirst-time stroke survivors and caregivers’ perceptions of being engaged in rehabilitationJ Adv Nurs2016721738426399942
  • MullinsJBlissDZRolnickSHenreCAJacksonJBarriers to communication with a healthcare provider and health literacy about incontinence among informal caregivers of individuals with dementiaJ Wound Ostomy Continence Nurs201643553954427607750
  • PindusDMMullisRLimLStroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – A systematic review and meta-ethnographyPLoS One2018132e019253329466383
  • della PelleCOrsattiVCipolloneFCicoliniGHealth literacy among caregivers of patients with heart failure: A multicentre cross-sectional surveyJ Clin Nurs2018273–485986529076583
  • YamashitaTBardoARMillarRJLiuDNumeracy and preventive health care service utilization among middle-aged and older adults in the U.SClin Gerontol201825112
  • BalakrishnanMPHerndonJBZhangJPaytonTShusterJCardenDLThe association of health literacy with preventable emergency department visits: a cross-sectional studyAcad Emerg Med20172491042105028646519
  • GrubbsVGregorichSEPerez-StableEJHsuCYHealth literacy and access to kidney transplantationClin J Am Soc Nephrol20094119520019056617
  • KazleyASHundJJSimpsonKNChavinKBaligaPHealth literacy and kidney transplant outcomesProg Transplant2015251859025758806
  • SchnuellePLorenzDTredeMvan der WoudeFJImpact of renal cadaveric transplantation on survival in end-stage renal failure: evidence for reduced mortality risk compared with hemodialysis during long-term follow-upJ Am Soc Nephrol19989213521419808102
  • GradyPAGoughLLSelf-management: a comprehensive approach to management of chronic conditionsAm J Public Health20141048e25e3124922170
  • CareyMPForsythADTeaching tip sheet: self-efficacyAmerican Psychological Association Available from: http://www.apa.org/pi/aids/resources/education/self-efficacy.aspxAccessed June 28, 2018
  • WengLCYangYCHuangHLChiangYJTsaiYHFactors that determine self-reported immunosuppressant adherence in kidney transplant recipients: a correlational studyJ Adv Nurs201773122823927532342
  • ZelleDMCorpeleijnEKlaassenGFear of movement and low self-efficacy are important barriers in physical activity after renal transplantationPLoS One2016112e014760926844883
  • WengLCDaiYTHuangHLChiangYJSelf-efficacy, self-care behaviours and quality of life of kidney transplant recipientsJ Adv Nurs201066482883820423370
  • SilvaANMoratelliLTavaresPLSelf-efficacy beliefs, locus of control, religiosity and non-adherence to immunosuppressive medications in kidney transplant patientsNephrology2016211193894326636921
  • RussellCLAshbaughCPeaceLTime-in-a-bottle (TIAB): a longitudinal, correlational study of patterns, potential predictors, and outcomes of immunosuppressive medication adherence in adult kidney transplant recipientsClin Transplant2013275E580E59024093614
  • GeboersBde WinterAFSpoorenbergSLWyniaKReijneveldSAThe association between health literacy and self-management abilities in adults aged 75 and older, and its moderatorsQual Life Res201625112869287727101999
  • SongSLeeSMJangSMediation effects of medication information processing and adherence on association between health literacy and quality of lifeBMC Health Serv Res201717166128915814
  • AhnYHHamOKFactors associated with medication adherence among medical-aid beneficiaries with hypertensionWest J Nurs Res201638101298131227272159
  • ChisholmMALanceCEWilliamsonGMMulloyLLDevelopment and validation of an immunosuppressant therapy adherence barrier instrumentNephrol Dial Transplant200520118118815572384
  • GastonRSHudsonSLWardMJonesPMaconRLate renal allograft loss: noncompliance masquerading as chronic rejectionTransplant Proc1999314A21S23S
  • ButlerJARoderickPMulleeMMasonJCPevelerRCFrequency and impact of nonadherence to immunosuppressants after renal transplantation: a systematic reviewTransplantation200477576977615021846
  • ChisholmMAKwongWJSpiveyCAAssociations of characteristics of renal transplant recipients with clinicians’ perceptions of adherence to immunosuppressant therapyTransplantation20078491145115017998870
  • SpiveyCAChisholm-BurnsMADamadzadehBBillheimerDDetermining the effect of immunosuppressant adherence on graft failure risk among renal transplant recipientsClin Transplant20142819610424329814
  • MartinezKAResnicowKWilliamsGCDoes physician communication style impact patient report of decision quality for breast cancer treatment?Patient Educ Couns201699121947195427395750
  • TraylorAHSchmittdielJAUratsuCSMangioneCMSubramanianUAdherence to cardiovascular disease medications: does patient-provider race/ethnicity and language concordance matter?J Gen Intern Med201025111172117720571929
  • CooperLARoterDLJohnsonRLPatient-centered communication, ratings of care, and concordance of patient and physician raceAnn Intern Med20031391190791514644893
  • BlanchardJNayarSLurieNPatient-provider and patient-staff racial concordance and perceptions of mistreatment in the health care settingJ Gen Intern Med20072281184118917486386
  • SahaSShipmanSAThe rationale for diversity in the health professions: a review of the evidenceUS Department of Health and Human Services102006 Available from: https://www.pipelineeffect.com/wp-content/uploads/2015/04/diversityreviewevidence.pdfAccessed 26 September 2018
  • LiangLBrachCHealth literacy universal precautions are still a distant dream: analysis of U.S. data on health literate practicesHealth Lit Res Pract201714e216e23029202120
  • WittenbergEFerrellBKanterEBullerHHealth Literacy: Exploring Nursing Challenges to Providing Support and UnderstandingClin J Oncol Nurs2018221536129350714
  • ColemanCAFromerAA health literacy training intervention for physicians and other health professionalsFam Med20154738839225905883
  • BerkmanNDSheridanSLDonahueKEHealth literacy interventions and outcomes: an updated systematic reviewEvid Rep Technol Assess20111991941
  • Agency for Health Research & QualityHealth literacy universal precautions toolkit2nd editionUse the teach-back method: tool #5 Available from: https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/healthlittoolkit2-tool5.htmlAccessed 2018 June 28
  • MeppelinkCSSmitEGBuurmanBMvan WeertJCShould we be afraid of simple messages? The effects of text difficulty and illustrations in people with low or high health literacyHealth Commun201530121181118926372031
  • BurkeMTKapojosJSammartinoCGrayNAKidney disease health literacy among new patients referred to a nephrology outpatient clinicIntern Med J201444111080108624989694
  • WatermanADMcsorleyAMPeipertJDExplore Transplant at Home: a randomized control trial of an educational intervention to increase transplant knowledge for Black and White socioeconomically disadvantaged dialysis patientsBMC Nephrol201516115026316264
  • YeungDLAlvarezKSQuinonesMELow-health literacy flashcards & mobile video reinforcement to improve medication adherence in patients on oral diabetes, heart failure, and hypertension medicationsJ Am Pharm Assoc20175713037
  • RosaasenNMainraRKukha-BrysonADevelopment of a patient-centered video series to improve education before kidney transplantationPatient Educ Couns20181011624162929729857
  • BergnerEMNelsonLARothmanRLMayberryLText messaging may engage and benefit adults with type 2 diabetes regardless of health literacy statusHealth Lit Res Pract201714e192e20229214241
  • McgillicuddyJWGregoskiMJWeilandAKMobile health medication adherence and blood pressure control in renal transplant recipients: a proof-of-concept randomized controlled trialJMIR Res Protoc201322e3224004517
  • GordonEJFeinglassJCarneyPA culturally targeted website for Hispanics/Latinos about living kidney donation and transplantation: a randomized controlled trial of increased knowledgeTransplantation20161001149116026444846
  • GordonEJFeinglassJCarneyPA website intervention to increase knowledge about living kidney donation and transplantation among Hispanic/Latino dialysis patientsProg Transplant2016261829127136254
  • LamAYNguyenJKParksJJMoriskyDEBerryDLWolpinSEAddressing low health literacy with “Talking Pill Bottles”: A pilot study in a community pharmacy settingJ Am Pharm Assoc20175712029
  • HarrisonJJBadrSHamandiBKimSJRandomized controlled trial of a computer-based education program in the home for solid organ transplant recipients: impact on medication knowledge, satisfaction, and adherenceTransplantation20171011336134327367473
  • BonnerAGillespieKCampbellKLEvaluating the prevalence and opportunity for technology use in chronic kidney disease patients: a cross-sectional studyBMC Nephrol20181912829394930
  • Agency for Healthcare Research and Quality (AHRQ)AHRQ health literacy universal precautions toolkit, second edition82018 Available from: https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/index.htmlAccessed October 26, 2018
  • Health Literacy Tool Shed Available from: https://healthliteracy.bu.edu/Accessed October 26, 2018
  • Readability Test Tool Available from: https://www.webpagefx.com/tools/read-able/Accessed October 26, 2018