Sociodemographic Correlates of Low Health Literacy Skills among Cancer Survivors: National Findings from BRFSS 2016 and Implications for Precision Survivorship Care

doi:10.21203/rs.3.rs-2094195/v1

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Sociodemographic Correlates of Low Health Literacy Skills among Cancer Survivors: National Findings from BRFSS 2016 and Implications for Precision Survivorship Care

https://doi.org/10.21203/rs.3.rs-2094195/v1

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Purpose

The purpose of the present study is to examine the prevalence of low health literacy skills among cancer survivors and their sociodemographic correlates.

Methods

This study used 2016 Behavioral Risk Factor Surveillance System data. We conducted weighted Chi-square test and logistic regression to compare the difference in prevalence of low health literacy skills between cancer survivors and non-cancer survivors. We used multiple and multinominal logistic regressions to assess the association between sociodemographic characteristic (sex, age, race/ethnicity, marital status, education, employment and household income) and three health literacy skills (difficulty obtaining, difficulty understanding oral, and difficulty understanding written health information).

Results

Difficulty understanding oral and written information is greater among cancer survivors than non-cancer survivors. Low educational attainment and income were associated with greater difficulties with all three health literacy skills. Young adult, male, and Hispanic cancer survivors have more difficulties obtaining health information. For cancer survivors, the odds of having difficulties in three health literacy skills versus the odds of having no difficulties were higher for those who were younger than 65, Hispanic, unemployed, with education levels lower than some college and with household income under $25,000.

Conclusion

Sex, age, race/ethnicity, income, employment and education are significant indicators of different health literacy skills among cancer survivors.

Implications for Cancer Survivors

Oncology providers seek to better communicate with cancer survivors from diverse backgrounds. Intervention programs need to be tailored for different skills with different populations to meet their expectation in terms of age, language, knowledge based and culture backgrounds.

Health Literacy

Cancer Survivor

Information Seeking

Print Literacy

Oral Literacy

Health literacy is a key determinant of health. The U.S. Department of Health and Human Services (HHS) defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions.”[1, 2] Low health literacy is a social risk associated with worse healthcare and health outcomes [3]. People with low health literacy have a higher likelihood of poor self-management and medication adherence, misinterpretation of provider’s instruction, lower vaccine and screening rate, increased risk of long-term health conditions, increased hospitalizations and emergency care visits, worse overall health status and higher rates of mortality [4–7]. Addressing low health literacy is a public health agenda in the US. It is estimated that only 12% of US adults have proficient health literacy, whereas 14% of the population have below basic health literacy [8]. To address the issue, Healthy People 2030 has elevated the importance of health literacy by declaring it a foundational principle and overarching goal of improving health [2].

The importance of understanding and improving patient’s health literacy is even more critical in oncology settings. To fully understand cancer treatment, risks, and outcomes to make informed decisions throughout the cancer trajectory requires a certain level of health literacy. Conversations involving one’s healthcare will inevitably involve medical jargon and knowledge in the medical and health care system. When transitioning to survivorship care phase, cancer survivors face more challenges due to the decreased connection with the healthcare system but increasingly complex needs of symptom and medication self-management [9, 10]. Without support in improving health literacy, cancer survivors of low health literacy skills are likely to have poorer prognosis, increased risk of cancer related comorbidities and lower health related quality of life [11].

The growing interest in health literacy is beginning to be explored in cancer research. Some studies have started to look at the prevalence of health literacy among cancer patients and survivors. One study evaluated 60 head and neck cancer patients and 30 lung cancer patients and found the prevalence of inadequate and marginal health literacy was approximately 12% [12]. A cancer health literacy study involving 1,306 Black and White cancer patients found the limited cancer health literacy rate was 18%, consisting of an overrepresentation of Black, undereducated, and low-income cancer patients [13]. A more recent study used population-based survey data to examine the prevalence of low health literacy among cancer survivors and the estimate was 16%, similar to the prior study [14]. There is also a considerable literature base regarding sociodemographic factors affecting health literacy. However, the existing literature largely focused on the relationship between sociodemographic factors and cancer health literacy among the general population [15]; limited evidence exists regarding cancer patients and survivors. Well documented factors associated with lower health literacy in the general population include low educational attainment, low income, older age, race and ethnicity (African American and Hispanic in the US) and language spoken [1, 16–18]. One particular study that examined sociodemographic correlates with health literacy among cancer survivors found being male, having low educational attainment and low household income were each associated with low health literacy [14].

The current literature in cancer health literacy has mostly examined general health literacy level. However, health literacy has many components that influence a person’s ability to understand the information delivered and to make informed healthcare decisions. According to the Health Literacy Skills Framework [19], Health literacy is a multidimensional, dynamic construct that involved different dimensions of health literacy including print literacy (reading and writing), oral literacy (listening and speaking), and information seeking skills (navigation and ehealth). They are defined as separate skills that can be developed, enhanced, refined, and even lost over the course of a lifetime and the mastery of these skills can be at different stages and misaligned. Research has found that people with low health literacy have more difficulty understanding written information than spoken information [20]. With the field moving forward to a direction of precision survivorship care, we should understand individuals’ different literacy skill level to design the best strategy of health information delivery that can maximize the benefit for cancer survivors.

To address the gap in understanding the information seeking, oral literacy, and print literacy skills among cancer survivors and their sociodemographic disparities, this study aims to use a nationally representative sample to provide answers in 1) the prevalence of low health literacy skills among cancer survivors and how they are different compared to non-cancer survivors; 2) the sociodemographic correlates in different health literacy skills (specifically, obtaining information, understanding oral information, and comprehending written information) and severity of low health literacy skills among cancer survivors.

Data Source

We performed a cross-sectional analysis of health literacy skills among people diagnosed with cancer and those without a history of cancer among US citizens using data extracted from the 2016 Behavioral Risk Factor Surveillance System (BRFSS). BRFSS is a nationally representative self-reported survey of health behaviors, chronic health conditions, and healthcare access among noninstitutionalized U.S. adults in all 50 states, the District of Columbia, Guam, and Puerto Rico operated by Centers for Disease Control and Prevention using both cellular and landline telephones [21]. BRFSS contains core items that are administered to every survey respondent and optional modules and state-added questions to respondents in selected States and territories. This study utilized data from 17 states and territories that administered the health literacy optional module, which are Alabama, Alaska, Georgia, Illinois, Kansas, Iowa, Louisiana, Maryland, Minnesota, Mississippi, Nebraska, North Carolina, Oklahoma, Pennsylvania, and Virginia, Washington, DC and Puerto Rico.

Sample

The sample of the study were respondents who responded to questions in the health literacy module (N = 116, 558). Of those, 98,724 were non-cancer and 17,834 had a cancer diagnosis and responded to questions in the health literacy module

Measures

Two filter variables were used to determine the analytic sample of the study. Respondents were classified as cancer survivors if they responded “yes” to either the question “(Ever told) you had skin cancer?” or “(Ever told) you had any other types of cancer?” Respondents were categorized as having no history of cancer if they responded “no” to these two questions.

Health literacy skills were the outcome variables in this study. The BRFSS health literacy module included questions about three skills: obtaining information, understanding oral information, and comprehending written information. Three questions were asked: a) “How difficult is it for you to get advice or information about health or medical topics if you need it?”, b) “How difficult is it for you to understand information that doctors, nurses and other health professionals tell you?”, c) “In general, how difficult is it for you to understand written health information?”. We created a dichotomous variable for each question, coded “0” for “no difficulty” (including “very easy” or “somewhat easy”) and “1” for “having difficulty” (“somewhat difficult” or “very difficult”). “Don’t know,” “refused,” and not applicable responses were recoded as system missing. The response rates to these three items were 92%, 92% and 95% respectively. Only those who responded were included in the analysis, we created another categorical outcome variable, low health literacy skills, by summing up three dichotomous health literacy skill variables. It ranges from 1 to 3 with 1 being no difficulties in any health literacy tasks, 2 being having difficulties in 1 to 2 tasks and 3 being having difficulties in all tasks.

Sociodemographic characteristics were the independent variables, including sex, age, race/ethnicity, education, employment, household income level and marital status. Sex was defined as male or female. Race/ethnicity classifications were non-Hispanic White, non-Hispanic Black, Hispanic, and other races. Age was classified as three categories: 18 to 39, 40 to 64 and 65 and older. Educational attainment was a four-category variable representing some high school, graduated high school, some college, or graduated college. Employment status indicated whether a respondent was employed or not employed. Household income was classified as lower than $25,000, $25,000 to $50,000, $50,000 to $75,000 and more than $75,000. Marital status indicated whether a respondent was married/partnered or not married/partnered.

Statistical analyses were performed using Stata 17 software [24]. Fourteen states and territories collected the health literacy data as a common module in the combined landline telephone and cellular telephone (data version 1) and the rest of 3 states collected it in another split version questionnaires (data version 2) [22]. Appropriate sampling weights for each data version were provided with the BRFSS dataset, which utilized an improved iterative proportional fitting method of post-stratification that permitted sociodemographic levels and telephone use [23]. We created a new weighting variable to combine the two versions of data. New sampling weights were applied to BRFSS sample participants to calculate population-level estimates.

We used weighted Chi-square test to compare the difference in weighted prevalence estimates and corresponding 95% confidence intervals (CI) of low health literacy skills between cancer survivors and non-cancer survivors. Multiple logistic regressions were used to investigate the associations between sociodemographic factors and the three health literacy skills. Multinomial logistic regression analyses were conducted to examine the sociodemographic correlates with different severity levels of low health literacy. [24].

Sample Characteristics

Among the study sample of cancer survivors (n=17,834), approximately 60% were female. The majority of cancer survivors were in the age group of 40 to 64 (49%) and 47% were aged 65 years old or older. Non-Hispanic Whites were the largest racial/ethnic group among the study sample (87.2%), followed by Non-Hispanic African Americans (6.21%), Hispanics/Latinx (3.93%), and other races (2.66%). Nearly 37% of cancer survivors graduated from college and 92% had an educational attainment of a high school degree or higher. Among the study sample, over 70% were not employed, about one fifth reported household income being less than $25,000, and nearly 56% were married.

Prevalence of Low Health Literacy skills

Table 1 showed the prevalence of having difficulty in three health literacy skills among cancer survivors and non-cancer survivors and the differences within each sociodemographic group. The prevalence of having difficulty in obtaining information was 4.69% (95% CI = 4.13-5.31) among cancer survivors, lower than the prevalence among non-cancer survivors (5.45%, 95% CI = 5.17-5.74, p<.05) (See Table 1). The prevalence of having difficulty in understanding oral information and written information among cancer survivors was 8.54% (95% CI = 7.79-9.35) and 8.68% (7.92-9.49), significantly higher than those among noncancer controls (oral: 7.37%, 95% CI=7.05-7.7, p<.01; written: 7.71%, 95% CI=7.38-8.05, p<.05). The prevalence of having difficulty in each health literacy skill among cancer survivors decreased with the increase in education level and household income and with a married and employed status, similar with those who are non-cancer survivors. Cancer survivors who were male, non-Hispanic Black, Hispanic and other races have a higher prevalence of having difficulties in understanding oral and written information than their noncancer controls. Such difference was not as obvious as the prevalence of having difficulties in obtaining information for different race/ethnic groups. However, for different sex groups, male cancer survivors had a lower prevalence of obtaining health information compared to their female counterparts (Male: 3.73, Female: 5.41%, p<.01) and it was not observed among the noncancer controls (Male: 5.69%, Female: 5.23%, p=.11). The prevalence of having difficulty in obtaining health information among cancer survivors decrease with the increase of age (p<.001), but such a trend was not observed in the prevalence of having difficulty in understanding oral and written information.

Sociodemographic Correlates of Low Health Literacy Skills

The adjusted odds ratios (AORs) of Low Health literacy Skills among Cancer survivors are presented in Table 2.

Obtaining Health Information

Cancer survivors who were younger than 65 (aged 18 to 39: AOR=4.46, 95% CI=2.32-8.57, p<.001; aged 40 to 64: AOR=2.29, 95% CI=1.66-3.15, p<.001) were more likely to have difficulty in obtaining health information. Cancer survivors who identified as Hispanic (AOR = 2.17, 95% CI = 1.61-2.50, p<.01) had higher odds of difficulty in obtaining health information compared to the odds of their non-Hispanic White counterparts. Having some high school education (AOR = 2.61, 95% CI = 1.53-2.75, p<.001) and graduated from high school (AOR = 1.75, 95% CI = 1.12-2.75, p<.01) were each associated with higher odds of having low skills in obtaining health information relative to those who had graduated college. Cancer survivors who were unemployed had higher odds of having difficulty in obtaining health information compared to the odds of those who were employed (AOR = 1.62, 95% CI = 1.03-2.55, p<.05). Having a household income lower than $25,000 was associated with 4.07 times higher odds of having difficulty obtaining health information compared to the odds of those who had a household income over $75,000 (AOR = 4.07, 95% CI = 2.09-7.93, p<.001).

Understanding Oral Information

Female cancer survivors had lower odds of low oral literacy skills (AOR = .69, 95% CI= .55-.87, p<.01) compared to male cancer survivors. Cancer survivors who were 40 to 64 years old had higher odds of difficulty in understanding oral information compared to their older counterparts (AOR= 1.45, 95% CI = 1.12-1.88, p<.01). Cancer survivors identified as other races (i.e. Not White non-Hispanic, Black non-Hispanic, or Hispanic) had higher odds of low oral literacy skills compared to the odds of non-Hispanic Whites (AOR = 1.76, 95% CI = 1.08-2.85, p<.05). Having some high school education (AOR = 4.78, 95% CI = 3.13-7.28, p<.001), graduated from high school (AOR = 3.02, 95% CI = 2.15-4.24, p<.001) and some college (AOR = 1.83, 95% CI = 1.28-2.6, p<.01) were associated with higher odds of difficulty obtaining health information relative to the odds of those who graduated college. Cancer survivors who were unemployed had higher odds of having difficulty in understanding oral information compared to the odds of those who were employed (AOR = 1.16, 95% CI = 1.03-1.30, p<.01). Having a household income lower than $25,000 (AOR = 3.35, 95% CI = 2.17-5.17, p<.001) or between $25,000 and $50,000 (AOR = 1.65, 95% CI = 1.1-2.48, p<.05) was associated with higher odds of low oral literacy compared to the odds of those who had a household income over $75,000.

Comprehending Written Information

Female cancer survivors were less likely to have difficulty in comprehending written information relative to the odds of male cancer survivors (AOR = .58, 95% CI= .46-.74, p<.001). Cancer survivors who attended some high school (AOR = 4.67, 95% CI = 3.18-6.85, P<.001), graduated high school (AOR = 2.65, 95% CI = 1.91-3.69, p<.001) or attended some college (AOR = 1.5, 95% CI = 1.07-2.12, p<.05) had higher odds of low print literacy relative to the odds of those who completed college. Additionally, cancer survivors whose household income was lower than $25,000 (AOR = 4.62, 95% CI = 2.9-7.37, p<.001), between $25,000 and $50,000 (AOR = 2.65, 95% CI = 1.72-4.16, p<.001) or between $50,000 and $75,000 (AOR = 1.73, 95% CI=1.06-2.84, p<.05) had higher odds of low oral literacy compared to the odds of those who had a household income over $75,000.

Sociodemographic Correlates of Severity of Low Health Literacy Level

Table 3 reported the relative risk ratios of the severity of low health literacy level associated with sociodemographic factors. The relative risk ratios of having difficulties in one or two health literacy skills compared to no difficulties at any health literacy skills were higher among cancer survivors who aged 18-39 (RRR=1.96, 95% CI = 1.25-3.08, p<.01), attended some college (RRR=1.71, 95% CI = 1.36-2.82, p<.001), graduated high school (RRR = 2.46, 95% CI = 1.86-3.25, p<.001) or attended some high school (RRR= 3.48, 95% CI = 2.45-4.94, p<.001), and had a household income under $25,000 (RRR = 3.75, 95% CI = 2.54-5.53, p<.001) or between $25,000 and $50,000 (RRR=1.96, 95% CI = 1.36-2.82, p<.001). Being female had a lower relative risk ratio of having difficulties in one or two health literacy skills compared to no difficulties with any skills (RRR=.72, 95% CI = .59-.89, p<.01).

The relative risk ratios of having difficulties in all three health literacy tasks vs. no difficulties were higher for those who were younger than 65 (aged 18-39: RRR= 10.18, 95% CI = 2.41-4.3, p<.01; aged 40-64 (RRR=4.01, 95% CI = 2.09-7.69, p<.001), Hispanic (RRR=3.24, 95% CI = 1.66-11.34, p<.01), unemployed (RRR=6.1, 95% CI = 2.88-12.76, p<.001), with education levels lower than some college (attended some high school: RRR = 4.34, 95% CI = 1.66-11.34, p<.01), graduated high school (RRR = 2.62, 95% CI = 1.21-5.68, p<.05) and had a household income under $25,000 (RRR = 6.99, 95% CI = 2.8-17.5, p<.001).

This is the first study looking at the prevalence of low health literacy in specific skills including information seeking, print literacy and oral literacy among cancer survivors and their sociodemographic correlates using a national representative sample.

The differences of prevalence in low health literacy skills between cancer survivors and noncancer controls show that cancer survivors had less difficulty obtaining health information compared to non-cancer survivors, whereas they reported lower proficiency in terms of understanding the print and spoken information provided. Comprehension of spoken and written health-related information is critically important for cancer survivors to understand their health situation and make cancer related decisions [25]. One reason cancer survivors reported higher proficiency in obtaining information but lower in comprehending information could be that their supportive network including healthcare providers provided more guidance on where and how to access information and directly shared more health-related information. However, the health information for cancer survivors is more unfamiliar and complex and therefore, harder to comprehend. Meanwhile, less attention was given to ensure that they can understand the information provided to them and get assistance in comprehending the information when needed. Currently, there is no established standardized instrument or national health survey to evaluate the performance of oral and print health literacy tasks. Further research is needed to determine whether these two skills could independently predict health behavior and health outcomes.

The higher prevalence in limited health literacy skills in information seeking and understanding oral and written information found among those with lower educational attainment, lower household income, those who were unemployed and members of a race/ethnicity minority group is consistent with the literature [12, 13]. Interestingly, we found that older adults (aged older than 64) only reported lower proficiency in comprehending written information compared to younger counterpart (aged 18–39), whereas the prevalence in low information obtaining and oral literacy skills were lower, which supplemented the prior findings about older adults having low health literacy by identifying the particular skill they need to work on [26]. The non-Hispanic Black group reported similar prevalence levels as non-Hispanic White in difficulty in obtaining health information compared to other race/ethnicity minority groups. The increase of cell phones among less economically privileged families might be able to explain the bridging of divide in information access. Reported by Pew Internet Project, teens from low-income households, 44% of black teens use their cell phones to go online, compared with 21% of white teens [27]. This could lower the barrier to finding information.

Substantial research has proven that females have higher health literacy level than males [28, 29]. But after we looked at health literacy skills separately, we found that females had lower odds of having difficulty understanding oral and written information but higher odds of difficulty seeking health information compared to males. Interestingly, literature showed that females are more likely to look for health information than males because they carried more care responsibilities and constantly need to look after family members, therefore they are the ones in the family to seek information about care [30–33]. The literature also demonstrates that men with cancer are less likely than women to seek health services and psychological support services [34, 35], which might be able to explain the higher confidence resulted from their low needs. A qualitative study of cancer patients’ experience seeking information found that male cancer patients stated that the women who were related to them had used a wide range of information sources, which the men themselves had not explored [36]. It is likely that females make more attempts in information seeking but feel unsuccessful in getting the information they need. Moreover, it was also found that women patients often valued the knowledge and experience of other cancer patients more than medical information; by contrast, the men rarely spoke of relying on the experience of other patients [36]. This information could be difficult to access regarding some rare conditions or side effects related to cancer treatment and medication. Our findings demonstrate the benefits of taking one step further from investigating the likelihood of information seeking behavior towards understanding the experience of information seeking to learn about what the gender differences are and what obstacles they meet so that we can develop strategies to address the issues.

It is worth noting that young adult cancer survivors (age 18–39) reported higher prevalence of low health literacy skills in all three dimensions compared to non-cancer survivors of the same age. Young adult cancer survivors also had significantly higher odds of obtaining health information in particular compared to older adult cancer survivors (age 65 or older). The multinomial results highlighted the greater risks of having issues with multiple types of literacy skills among young adult compared to older adults. Although this is contradictory to prior findings of higher health literacy prevalence among this age group in the general population, it is supported by emerging evidence in the health disparities research of young adult cancer patients and survivors. Defined by the National Cancer Institute, young adult (YA) cancer patients are those who were diagnosed with cancer between the ages of 18 and 39 [37]. The creation of this age definition is due to the unique biological (biologic differences in cancer types) and developmental (socioeconomic status and age-specific challenges) challenges they face that might complicate medical care and require more age-appropriate support than older adults [38–42]. Given that cancer is still a relatively rare disease among YAs, it is difficult to find peer support and age-appropriate information [43, 44]. While older adults might have more experience seeking health information because they have more encounters with healthcare system given the increasing chances of health problems that require care or caregiving experiences of a loved one. In addition, specific difficulties that YA cancer survivors might face are interruptions in education and career development, separation from original family and forming new family ties, and treating sexual functioning and infertility, all of which could cause financial crisis [39, 42, 45–47], but in this study, we found even after taking into account educational attainment, household income and employment status, YAs are still more likely to have lower information seeking skills compared to older adult cancer survivors. The disparity of health literacy in YA cancer is more pronounced in survivors who have completed treatment, as providers narrows their focus on merely evaluation for disease recurrence. This finding sheds light on the urgency of addressing YAs’ needs in information seeking and understanding.

Our results supported the prior findings in the literature of the general population that socioeconomic status including education, household income, and employment were determinants of health literacy level [16–18]. When it comes to separate health literacy skills, we found that after accounting for socio-economic status and age these were no longer significant indicators of comprehending written information skill, and being non-Hispanic Black was not significantly associated with low proficiency in any of the three health literacy skills. These findings were different from what has been found about the correlation between age and race/ethnicity with general health literacy level in the literature. These results show that the unadjusted effects that different age and race/ethnicity groups had on health literacy [48] were a result of educational disparities and income gaps existing in different generations and in race/ethnicity minority groups. Another study also had similar discovery that for adults older than 65, levels of health literacy still varies within that age group based on socioeconomic status and education level [1].

In terms of information obtaining skills and understanding oral information skills, some race and ethnicity minority groups were still found to have higher odds of lower skills after taking into consideration their socioeconomic status. Additionally, different race/ethnicity groups reported difficulty in different health literacy skills. Individuals of Hispanic ethnicity were the only race/ethnicity group associated with higher odds of low health information obtaining skills compared to non-Hispanic Whites. Besides the knowledge of access to information, the ability of seeking health information could also relate to trust of the information source. Research has supported that Hispanics were less likely to trust a doctor or health professional as compared with Whites [49]. The result from the multinomial regression also implied that the language factor of being Hispanic eventually added to the severity of having low health literacy skills in all three dimensions [11]. Being other races including Asian, Alaska native and American Indian and multiple races was found to be associated with higher odds of difficulty in understanding oral information in the literacy. Given the small sample size and the complex cultural backgrounds of this population, it is difficult to determine whether it is a language issue or relates to other factors. Future research could benefit from using oversampling technique to recruit participants for the purpose of further exploring the health literacy level among these groups.

There are some limitations in this study. First, the respondent’s answers are subject to response bias. According to the report of BRFSS Health Literacy data, the distribution of health literacy total scores was highly skewed in a positive direction with about 43% of respondents indicated that all three health literacy tasks were “very easy” [50]. Nevertheless, it is common in the previous study of health literacy that self-report grossly over-estimated respondents’ actual proficiency. Secondly, less than 1% of the analytic sample spoke Spanish, therefore language was not included in the analysis model. Evidence has showed that language was a significant factor affecting health literacy skill. Future research should consider including Spanish speaking respondents to ensure the generalizability of the findings and to explore the potential disparities among individuals in the US whose primary language used was not English. Third, the sample size of Asian, Alaska native and American Indian and multiple races were too small for analysis, which resulted in the combination and creation of the “other races” categories for the race and ethnicity variables. We believe it would be also important to look at how these other groups functions in terms of conducting different health literacy tasks. Since some of the groups also have their own culture and language, their cultural belief and language proficiency could also be barriers for acquiring high health literacy. Last, BRFSS data did not collect the information of the exact age of when or how long ago a patient received their cancer diagnosis. In addition, the survey did not identify which specific type of skin cancer the patient had. Thus, future research should determine whether there is any difference in health literacy skills by specific cancer types and their cancer trajectories. Our findings should be interpreted carefully and not be generalized to populations or fields of medicine due to our study design.

Implications

The complexity of cancer diagnosis and intricacies of the healthcare system creates problems for people affected by cancer with low health literacy and barriers to clear communication. Our study showed that this issue is particularly critical for young adults, people with low socioeconomic status and communities who historically disconnected with and have little trust in the healthcare system. This has strong implications for oncology nursing and social work practice. To remedy this, oncology psychosocial care providers should not only connect cancer survivors with health information sources and educational resources, but also put more effort into training oncology providers in deconstructing cancer-related information, such as utilizing visual tools, using more simple terminology, providing information pamphlet, to make it more relatable and comprehendible. It is also important to consider including family and support systems in the appointments to add another layer of informational support for cancer patients and survivors. It could be beneficial for oncology social workers or nurses to schedule a follow-up meeting or phone call after some information-loaded appointments to ensure the information is well-received and understood by the cancer patients, survivors and their family caregivers.

Receiving a diagnosis of cancer can thrust an individual and family into an entirely new world full of complex, challenging and even frightening information for marginalized populations and communities that may have historical mistrust of the health care system. Therefore, it is imperative that we as health care providers pay critically close attention to the delivery of cancer-related information and to assessing that patients and families are not only able to access but also understand this information. Our study revealed differences existed in prevalence and sociodemographic correlates in three different dimensions (information seeking, oral literacy, and print literacy) of health literacy skills. This has strong implications for oncology nurses and social works who often serve as translators of medical information in recognizing and understanding the challenges of cancer survivors from diverse backgrounds. Validated instruments are needed to evaluate these distinct health literacy skills among cancer survivors to ensure the best practice of provider-patient communication. It also emphasizes the necessity to address the intervention gaps of health literacy education for cancer survivors and health information deconstruction training for oncology providers. Interventions also need to be tailored for different skills, especially for male, young adult, survivors who are Hispanic and those who have low socioeconomic status, to meet their age, language, knowledge, and cultural expectations. Future health literacy research might want to focus on minority groups such as immigrant cancer survivors, Asian, Alaska Native and American Indian, and multiple race cancer survivors.

Funding

Qi Chen was supported by American Cancer Society Social Work Doctoral Training Grant (134807-DSW-20-086-01-SW).

Competing Interests

The authors have no relevant financial or non-financial interests to disclose.

Author Contributions

All authors contributed to the study conception and design. Material preparation and data analysis were performed by Qi Chen, John Moore and Kirk von Sternberg. The first draft of the manuscript was written by Qi Chen and all authors commented on the manuscript. All authors read and approved the final manuscript.

Data Availability

N/A

Ethics approval

This is a secondary data analysis study using public de-identified data. The Institutional Review Board of the University of Texas at Austin has confirmed that no ethical approval is required.

Consent to participate

N/A

Consent to publish

N/A

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Table 1

Prevalence of Low Health Literacy Skills among Cancer Survivors and Non-Cancer Survivors (%, 95% CI)
	Difficulty in obtaining health information				Difficulty in understanding oral information				Difficulty in Comprehending written information
	Cancer Survivors	p	Non cancer survivors	p	Cancer survivors	p	Non cancer survivors	p	Cancer survivors	p	Non cancer survivors	p
All	4.69 (4.13–5.31)		5.45 (5.17–5.74)	< .05	8.54 (7.79–9.35)		7.37 (7.05–7.7)	< .01	8.68 (7.92–9.49)		7.71 (7.38–8.05)	< .05
Sex		< .01		.11		< .05		< .01		< .01		< .01
Male	3.73 (3.03–4.58)		5.69 (5.27–6.15)		9.53 (8.32–10.89)		7.86 (7.38–8.36)		9.95 (8.71–11.35)		8.61 (8.09–9.16)
Female	5.41(4.62–6.33)		5.23 (4.87–5.61)		7.77 (6.89–8.75)		6.9 (6.49–7.33)		7.7 (6.81–8.69)		6.88 (6.48–7.31)
Age		< .001		< .05		.35		.16		.07		.16
18–39	10.56 (6.87–15.89)		5.8 (5.3–6.35)		10.97 (7.45–15.86)		7.01 (6.46–7.6)		9.91 (6.18–15.51)		6.77 (6.22–7.37)
40–64	4.71 (3.99–5.56)		5.37 (5-5.76)		8.48 (7.45–9.64)		7.63 (7.2–8.09)		7.66 (6.73–8.7)		8.05 (7.6–8.52)
>64	3.68 (3.06–4.42)		4.55 (4-5.17)		8.24 (7.22–9.4)		7.45 (6.76–8.2)		9.9 (8.72–11.2)		9.83 (8.92–10.83)
Race		< .001		< .001		< .001		< .001		< .001		< .001
White	4.05 (3.51–4.67)		3.68 (3.42–3.96)		7.66 (6.93–8.46)		5.89 (5.55–6.25)		7.51 (6.78–8.3)		6.15 (5.8–6.52)
Non Hispanic Black	4.6 (3.02–6.95)		5.96 (5.23–6.78)		11.01 (7.67–15.57)		7.42 (6.68–8.23)		14.44 (10.89–18.89)		7.98 (7.18–8.86)
Hispanic	15.64 (10.49–22.66)		12.81 (11.62–14.11)		16.73 (12.21–22.49)		14.01 (12.75–15.37)		17.62 (13.14–23.22)		15.12 (13.78–16.57)
Other	7.95 (5.4-11.57)		7.55 (6.21–9.14)		16.9 (12.42–22.58)		8.73 (7.42–10.24)		14.77 (10.29–20.77)		8.32 (6.95–9.92)
Education		< .001		< .001		< .001		< .001		< .001		< .001
Less than high school	11.12 (8.76–14.01)		15.26 (13.86–16.77)		21.63 (18.54–25.07)		20.46 (18.9-22.12)		24.36 (21.01–28.07)		22.42 (20.76–24.18)
High school	5.44 (4.46–6.63)		5.82 (5.33–6.35)		10.67 (9.2-12.34)		8.19 (7.63–8.77)		11.16 (9.73–12.76)		8.9 (8.3–9.53)
Some college	3.88 (3.04–4.94)		3.89 (3.49–4.34)		6.18 (5.15–7.4)		4.49 (4.11–4.9)		5.72 (4.71–6.93)		4.81 (4.36–5.3)
Graduated college	1.99 (1.56–2.52)		2.2 (1.94–2.49)		2.8 (2.24–3.5)		2.94 (2.62–3.29)		2.95 (2.39-3..62)		2.84 (2.52–3.19)
Employment		< .001		< .001		< .001		< .001		< .001		< .001
Employed	2.98 (2.19–4.03)		4.24 (3.9–4.6)		5.56 (4.5–6.86)		5.8 (5.42–6.2)		5.55 (4.51–6.8)		5.67 (5.28–6.08)
Unemployed	5.57 (4.86–6.37)		7.22 (6.75–7.73)		10.03 (9.07–11.09)		9.64 (9.1-10.21)		10.31 (9.33–11.39)		10.75 (10.17–11.35)
Income		< .001		< .001		< .001		< .001		< .001		< .001
<25k	10.4 (8.64–12.46)		11.55 (10.77–12.39)		16.47 (14.37–18.82)		13.38 (12.57–14.24)		17.23 (15.09–19.61)		14.09 (13.24–14.98)
25k-50k	3.32 (2.56–4.3)		4.99 (4.4–5.66)		6.92 (5.55–8.59)		6.69 (6-7.44)		8.23 (6.75-10)		6.98 (6.29–7.75)
50k-75k	1.42 (0.87–2.31)		2.35 (1.86–2.97)		4.62 (3.47–6.11)		4.25 (3.63–4.96)		4.5 (3.22–6.27)		4.3 (3.67–5.04)
75k	1.52 (.99-2.34)		1.53 (1.26–1.86)		3.12 (2.35–4.14)		2.79 (2.43–3.2)		2.27 (1.68–3.07)		3.18 (2.75–3.68)
Marital status		< .001		< .001		< .001		< .001		< .001		< .001
Married	3.28 (2.76–3.91)		4.34 (4-4.71)		7.09 (6.2–8.09)		6.38 (5.98–6.8)		7.02 (6.15-8)		6.51 (6.1–6.94)
Unmarried	6.98 (5.87–8.29)		6.81 (6.36–7.3)		10.8 (9.5-12.24)		8.51 (8.01–9.04)		11.37 (10.03–12.86)		9.18 (8.65–9.75)

Table 2

Adjusted Odds Ratio of Low Health Literacy Skills among Cancer Survivors (n = 17,834)
	Difficulty in obtaining health information	Difficulty in understanding oral information	Difficulty in comprehending written information
Sex (Male)
Female	1.06 (.76-1.47)	.69 (.55-.87)**	.58 (.46-.74)***
Age (65+)
18–39	4.46(2.32–8.57)***	1.64 (.93-2.92)	1.51 (.86-2.67)
40–64	2.29 (1.66–3.15)***	1.45 (1.12–1.88)**	1.06 (.82-1.37)
Race (White)
Non Hispanic black	.66 (.39-1.13)	1.01 (.64-1.58)	1.38 (.94-2.01)
Hispanic	2.17 (1.24–3.82)**	1.22 (.73-2.03)	1.26 (.81-1.96)
Other	1.51 (.71–3.18)	1.76 (1.08–2.85)*	1.62 (.93-2.82)
Education Attainment (Graduated college)
Less than high school	2.61 (1.53–4.45)***	4.78 (3.13–7.28)***	4.67 (3.18–6.85)***
High school	1.75 (1.12–2.75)**	3.02 (2.15–4.24)***	2.65 (1.91–3.69)***
Some college	1.44 (.91-2.28)	1.83 (1.28–2.60)**	1.5 (1.07–2.12)*
Employment (Employed)
Unemployed	1.62 (1.03–2.55)*	1.16 (1.03–1.30)*	1.07 (.76-1.48)
Income (75k+)
<25k	4.07 (2.09–7.93)***	3.35 (2.17–5.17)***	4.62 (2.9–7.37)***
25k-50k	1.77 (.96-3.28)	1.65 (1.1–2.48)*	2.68 (1.72–4.16)***
50k-75k	.81 (.39-1.66)	1.23 (.79-1.92)	1.73 (1.06–2.84)*
Marital status (Married)
Unmarried	1.25 (.88-1.77)	1.02 (.79-1.32)	1.05 (.81-1.36)
Note:
1. Reference groups denoted in parenthesis.
2. p value < 0.05, p value < 0.01, **p value < 0.001

Table 3

Relative Risk Ratios of (95% CI) Severity of Low Health Literacy Skills among Cancer Survivors (n = 17,834)
		Having difficulties in one or two health literacy skills	Having difficulties in all three health literacy skills
Sex (Male)
Female	--	.72 (.59-.89)**	.73 (.41 − 1.3)
Age (65+)
18–39	--	1.96 (1.25–3.08)**	10.18 (2.41–4.3)**
40–64	--	1.24 (.99-1.55)	4.01 (2.09–7.69)***
Race (Non-Hispanic White)
Non-Hispanic black	--	1.05 (.73-1.52)	.81 (.3-2.23)
Hispanic	--	1.35 (.87-2.09)	3.24 (1.31–8.02)**
Other	--	1.45 (.89-2.33)	2.42 (.56-10.45)
Education Attainment (Graduated college)
Less than high school	--	3.48 (2.45–4.94)***	4.34 (1.66–11.34)**
High school	--	2.46 (1.86–3.25)***	2.62 (1.21–5.68)*
Some college	--	1.71 (1.29–2.26)***	1.1 (.41-2.95)
Employment (Employed)
Unemployed	--	1.2 (.91-1.58)	6.1 (2.88–12.76)***
Household Income (75k+)
<25k	--	3.75 (2.54–5.53)***	6.99 (2.8–17.5)***
25k-50k	--	1.96 (1.36–2.82)***	2.3 (.90 − 5.8)
50k-75k	--	1.16 (.78-1.71)	.68 (.21-2.15)
Marital Status (Married)
Unmarried	--	1.04 (.82-1.31)	1.39 (.69-2.81)
Note:
1. Reference groups denoted in parenthesis.
2. p value < 0.05, p value < 0.01, **p value < 0.001

No competing interests reported.

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