Abstract
Health literacy is a set of knowledge and skills that enables individuals to obtain, communicate, process and understand information, and services to make appropriate health decisions and to successfully navigate the health care system. Health literacy is important to quality of cancer survivorship care and patient self-management of their disease.
We examined health literacy among cancer survivors, using data from the 2016 Behavioral Risk Factor Surveillance System. We compared health literacy across various demographic and socioeconomic groups and estimated the adjusted odds in favor of low health literacy for these characteristics.
We found that about 16% of the cancer survivors had low health literacy. The prevalence was higher among Hispanic and Black individuals, and among those with poor health status, low income and educational attainment.
A sizeable percentage of cancer survivors have low health literacy which is likely to complicate their ability to self-manage their disease and navigate the health care system for optimal care. In order to ensure the quality and appropriateness of cancer survivorship care, effective interventions are needed to address low health literacy in these populations.
Keywords: cancer, cancer survivors, health literacy
1. Introduction
Health literacy is a set of knowledge and skills that enables individuals to obtain, communicate, process and understand information and services to make appropriate health decisions, and to successfully navigate the health care system.[1] Health literacy skills can be defined as the personal characteristics and social resources needed for individuals to access, understand, appraise and use information and services, to make decisions about health.[2] Health literacy includes oral literacy (listening and speaking), print literacy (reading and writing), and numeracy as well as the ability to obtain and use information to make health-related decisions.[1] More than one-third of United States adults have limited health literacy, which affects health care access and quality, and contributes to poor health outcomes.[3] Low health literacy has been associated with poor self-management of chronic conditions, increased hospitalizations, and higher rates of mortality.[4] Studies have shown that lower health literacy skills are associated with an increased risk of long-term life-limiting health conditions and more difficulty managing medications.[4,5]
As cancer patients complete their treatment and enter the survival period, they face challenges about how to manage self-care and have an ongoing need for effective communication with health care providers and navigation of the healthcare system.[6] Cancer survivors who have completed primary therapy for the disease often have complex health care needs that include surveillance for recurrent disease or second primary malignancies, and the management of cancer-related morbidities.[7,8] Appropriate care during the post-initial treatment survivorship phase includes preventive care visits and screening for cancer recurrence.[7]
We examined health literacy among cancer survivors, using data from the 2016 Behavioral Risk Factor Surveillance System (BRFSS).
2. Methods
BRFSS is a cross-sectional telephone-based survey of United States residents 18 years of age and older, which collects information about health-related risk factors, chronic health conditions and use of preventive services. Participating jurisdictions are required to include all core questions and may also include optional modules. The Centers for Disease Control and Prevention developed a 3-question health literacy module that focused on obtaining health information and advice, oral literacy, and print literacy. This module was offered in 2016 and administered by 13 states (Alabama, Alaska, Georgia, Illinois, Iowa, Louisiana, Maryland, Minnesota, Mississippi, Nebraska, North Carolina, Pennsylvania, and Virginia) and Washington, DC to representative samples of randomly selected adults. The mean and median combined (landline and cell phone) weighted response rates for this group of states and Washington, DC were 45.08 and 42.50 percent, respectively.
Three health literacy 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) “You can find written information about health on the Internet, in newspapers and magazines, and in brochures in the doctor's office and clinic. 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 considered missing. We then created another outcome variable, low health literacy (yes, no), in which participants were classified as having low health literacy if they reported difficulty with 1 or more of the 3 health literacy tasks. A participant was identified as a cancer survivor if they answered “Yes” to the following question: “Ever told you have any other types of cancer (than skin cancer)?”.
All analyses were conducted with Stata version 14.0 and used BRFSS sampling weights to adjust for the complex sampling design. We first examined the prevalence of health literacy by demographic and socioeconomic factors among cancer survivors. We then used multiple logistic regression analysis to estimate the adjusted odds in favor of low health literacy for demographic (age, sex, and race), socioeconomic (household income, employment status and marital status) and health status and healthcare access (self-reported general health condition and health insurance coverage) covariates in this group of cancer survivors. This study, which was based upon anonymous public use data, was determined to be exempt from Institutional Review Board Review.
3. Results
Our study sample consists of 8339 cancer survivors. About 62% of the study participants were female and 38% were male. More than half (52%) of the cancer survivors in our sample were elderly (age 65+), and about one-third (31%) were of age 50 to 64 years. About three-fourth (77%) of the study participants were non-Hispanic White, 13% were non-Hispanic Black, and 6% were of Hispanic ethnicity. Around one-fourth of the study participants did not have high school diploma, and about 60% had some postsecondary education (some college or college degree). While 4 in ten cancer survivors reported household income of $50,000 or more, about one-third reported household income being less than $25,000.
About 16% of the cancer survivors in the sample reported low health literacy, which gradually decreased with age, educational attainment and household income. Around 5% of the participants reported difficulties in understanding medical advice, while 9% reported difficulties in understanding oral or written instructions (Table 1). Participants without a high school diploma reported a 27.5% higher prevalence (P < .000) of low health literacy compared with their peers with a college degree. Similar to the educational attainment gradient, higher household income was associated with a lower prevalence of low health literacy. Black and Hispanic cancer survivors reported a significantly higher (P < .000) low health literacy compared to white participants. The prevalence was also higher (P < .000) among those who were not employed and did not have health insurance coverage.
Table 1.
Prevalence of having difficulty understanding instructions and low health literacy by sociodemographic characteristics.
| Have difficulty to understand | ||||
| Medical advice% | Oral instruction% | Written instruction% | Low health literacy% | |
| All | 5.19 (4.30, 6.09) | 9.39 (8.17, 10.61) | 9.36 (8.18, 10.54) | 16.25 (14.77, 17.73) |
| Age | ||||
| 18 to 49 | 9.89 (6.10, 13.68) | 10.52 (6.75, 14.29) | 8.65 (5.13, 12.17) | 19.31 (14.62, 23.99) |
| 50 to 64 | 4.9 (3.56, 6.23) | 10.67 (8.31, 13.03) | 8.88 (6.84, 10.93) | 16.89 (14.15, 19.64) |
| 65+ | 3.82 (2.97, 4.68) | 8.26 (6.85, 9.66) | 9.87 (8.34, 11.41) | 14.89 (13.17, 16.60) |
| Sex | ||||
| Male | 4.03 (2.78, 5.27) | 10.88 (8.58, 13.18) | 10.9 (8.74, 13.05) | 17.4 (14.79, 20.02) |
| Female | 5.91 (4.69, 7.14) | 8.46 (7.11, 9.81) | 8.42 (7.06, 9.79) | 15.53 (13.79, 17.27) |
| Race | ||||
| White | 4.45 (3.52, 5.37) | 8.26 (7.05, 9.47) | 7.78 (6.61, 8.95) | 14.46 (12.93, 16.00) |
| Black | 4.31 (2.31, 6.31) | 11.9 (7.21, 16.60) | 14.85 (10.09, 19.62) | 19.87 (14.64, 25.10) |
| Hispanic | 15.17 (8.21, 22.12) | 17.94 (10.88, 25.00) | 17 (10.90, 23.11) | 30.62 (22.92, 38.32) |
| Other | 7.38 (3.69, 11.06) | 9.56 (5.36, 13.76) | 10.08 (5.60, 14.56) | 16.28 (10.87, 21.68) |
| Education | ||||
| Less than HS diploma | 10.89 (6.80, 14.99) | 21.91 (16.85, 26.97) | 24.71 (19.21, 30.20) | 34.08 (28.46, 39.69) |
| High school diploma | 6.21 (4.54, 7.87) | 10.51 (8.18, 12.85) | 11.45 (9.32, 13.59) | 19.14 (16.27, 22.00) |
| Some college | 4.28 (2.93, 5.63) | 6.84 (5.12, 8.56) | 5.78 (4.15, 7.42) | 12.46 (10.21, 14.72) |
| College graduate | 1.88 (1.19, 2.57) | 3.33 (2.20, 4.47) | 2.9 (2.02, 3.78) | 6.32 (4.93, 7.72) |
| Household income | ||||
| < $15,000 | 15.46 (10.70, 20.23) | 19.98 (14.74, 25.23) | 19.98 (15.80, 24.16) | 33.1 (27.60, 38.60) |
| $15,000 to $24,999 | 8.04 (5.27, 10.81) | 14.14 (10.59, 17.70) | 15.77 (11.67, 19.86) | 24.71 (20.42, 28.99) |
| $25,000 to $34,999 | 3.67 (1.96, 5.39) | 10.88 (6.48, 15.29) | 10.09 (6.26, 13.92) | 16.9 (12.20, 21.61) |
| $35,000 to $49,999 | 2.53 (1.00, 4.05) | 6.87 (3.66, 10.08) | 7.24 (4.15, 10.34) | 12.81 (8.96, 16.66) |
| $50,000 or more | 1.67 (0.88, 2.47) | 3.61 (2.54, 4.68) | 2.81 (1.88, 3.75) | 6.53 (5.04, 8.02) |
| Employment status | ||||
| Not employed | 5.82 (4.78, 6.86) | 10.59 (9.09, 12.09) | 10.76 (9.28, 12.25) | 18.17 (16.38, 19.97) |
| Employed | 3.42 (1.74, 5.11) | 6.58 (4.49, 8.66) | 5.93 (4.08, 7.77) | 11.37 (8.84, 13.89) |
| Martial status | ||||
| Not married | 7.24 (5.57, 8.91) | 10.77 (8.79, 12.75) | 11.57 (9.65, 13.49) | 19.63 (17.22, 22.04) |
| Married | 3.59 (2.68, 4.50) | 8.31 (6.78, 9.84) | 7.64 (6.16, 9.13) | 13.55 (11.74, 15.35) |
| Health insurance | ||||
| No coverage | 29.76 (18.40, 41.12) | 28.33 (17.76, 38.91) | 16.37 (8.20, 24.55) | 43.14 (32.28, 53.99) |
| Had coverage | 4.25 (3.49, 5.01) | 8.65 (7.47, 9.83) | 9.09 (7.91, 10.27) | 15.20 (13.76, 16.63) |
| Health condition | ||||
| Excellent | 1.27 (−0.42, 2.96) | 1.78 (0.58, 2.98) | 2.79 (0.74, 4.83) | 3.95 (1.80, 6.11) |
| Very good | 2.22 (1.12, 3.32) | 3.58 (1.87, 5.29) | 4.72 (2.92, 6.53) | 8.6 (6.14, 11.06) |
| Good | 2.92 (1.67, 4.18) | 7.6 (5.83, 9.37) | 8.5 (6.49, 10.50) | 14.25 (11.82, 16.67) |
| Fair | 9.29 (6.74, 11.84) | 14.59 (11.25, 17.93) | 14.29 (11.10, 17.49) | 23.5 (19.83, 27.18) |
| Poor | 11.23 (7.97, 14.49) | 18.85 (14.68, 23.02) | 15.14 (11.95, 18.33) | 28.38 (23.82, 32.95) |
| Sample size | 7894 | 8279 | 7769 | 8339 |
95% confidence intervals are in parenthesis. Estimates were obtained using complex survey weights.
HS = high school.
Table 2 shows the adjusted odds ratios in favor of low health literacy for various demographic and socioeconomic characteristics. The adjusted odds for Black and Hispanic participants were 1.4 and 2.5 times that of their white peers, respectively. Participants with less than a high school diploma showed a 3.7 times higher likelihood of low health literacy compared to participants with a college degree. The education gradient persisted at every level of educational attainment. Finally, those who reported poor health status had an adjusted odds of low health literacy of nearly 5 to 9 times that of those who reported excellent health status.
Table 2.
Adjusted odds ratios in favor of having low health literacy.
| (1) | (2) | (3) | (4) | |
| Model-I: Demographic covariates | Model-II: Socioeconomic covariates | Model-III: Health covariates | Model-IV: All covariates | |
| Age group | ||||
| 18–49 | Reference | |||
| 50–64 | 0.908 (0.636, 1.297) | 0.958 (0.655, 1.401) | ||
| 65+ | 0.784 (0.563, 1.091) | 0.702∗ (0.479, 1.027) | ||
| Sex | ||||
| Male | Reference | |||
| Female | 0.862 (0.689, 1.079) | 0.675∗∗∗ (0.518, 0.879) | ||
| Race | ||||
| White | Reference | |||
| Black | 1.433∗∗ (1.015, 2.024) | 0.992 (0.683, 1.440) | ||
| Hispanic | 2.504∗∗∗ (1.716, 3.655) | 1.290 (0.855, 1.946) | ||
| Other | 1.103 (0.718, 1.695) | 1.092 (0.650, 1.835) | ||
| Education | ||||
| College graduate | Reference | |||
| Less than high school diploma | 3.671∗∗∗ (2.399, 5.618) | 3.285∗∗∗ (2.164, 4.986) | ||
| High school diploma | 2.200∗∗∗ (1.552, 3.118) | 2.085∗∗∗ (1.450, 2.998) | ||
| Some college | 1.623∗∗∗ (1.145, 2.300) | 1.529∗∗ (1.076, 2.173) | ||
| Household income | ||||
| $50,000 or more | Reference | |||
| < $15,000 | 4.825∗∗∗ (3.108, 7.490) | 3.592∗∗∗ (2.266, 5.693) | ||
| $15,000 to $24,999 | 3.318∗∗∗ (2.269, 4.854) | 2.912∗∗∗ (1.987, 4.266) | ||
| $25,000 to $34,999 | 2.292∗∗∗ (1.481, 3.547) | 2.280∗∗∗ (1.491, 3.487) | ||
| $35,000 to $49,999 | 1.902∗∗∗ (1.226, 2.950) | 1.824∗∗∗ (1.174, 2.833) | ||
| Employment status | ||||
| Not employed | Reference | |||
| Employed | 1.142 (0.832, 1.567) | 1.012 (0.722, 1.420) | ||
| Marital status | ||||
| Not married | Reference | |||
| Married | 1.131 (0.873, 1.465) | 1.076 (0.828, 1.399) | ||
| Health insurance | ||||
| No coverage | Reference | |||
| Had coverage | 0.269∗∗∗ (0.167, 0.432) | 0.418∗∗∗ (0.256, 0.682) | ||
| Health condition | ||||
| Excellent | Reference | |||
| Very good | 2.272∗∗ (1.186, 4.351) | 2.937∗∗∗ (1.392, 6.199) | ||
| Good | 3.836∗∗∗ (2.101, 7.004) | 3.220∗∗∗ (1.598, 6.491) | ||
| Fair | 7.140∗∗∗ (3.907, 13.051) | 4.095∗∗∗ (2.004, 8.365) | ||
| Poor | 8.965∗∗∗ (4.869, 16.508) | 5.072∗∗∗ (2.414, 10.659) | ||
| Constant | 0.217∗∗∗ (0.152, 0.310) | 0.040∗∗∗ (0.028, 0.058) | 0.149∗∗∗ (0.072, 0.308) | 0.048∗∗∗ (0.018, 0.128) |
| Observations | 8,339 | 7,021 | 8,283 | 6,989 |
∗∗∗ P < .001, ∗∗ P < .05, ∗ P < .10. 95% confidence intervals are in parenthesis. Estimates were obtained using complex survey weights.
4. Discussion
The results of this study indicate that nearly one in every 6 cancer survivors reported low health literacy. The prevalence of low health literacy was higher among Hispanic and Black cancer survivors and among those with lower educational attainment and household income. Cancer survivors who reported poor health status were also more likely to report low health literacy. Individuals who experience disparities in cancer incidence and outcomes (for example, racial and ethnic minorities and low-income persons) are also those who are most likely to have low health literacy.[9]
These results have important implications for cancer survivorship care. Low health literacy is a barrier to good self-care and clinical care. Cancer survivors have an ongoing need for effective communication with primary care providers and oncologists.[6] Cancer survivors often have complex health care needs that include surveillance for recurrent disease or second primary malignancies, and the management of cancer-related morbidities.[7,8] Health literacy is important to quality cancer survivorship care and patient self-management of their disease. Low health literacy negatively impacts individual health behaviors such as adherence with weight control and tobacco cessation interventions, and cancer screening or surveillance recommendations.[10,11] Adults with limited health literacy obtain less information from disease prevention and control materials, and may be less likely to successfully manage their illness. For example, health literacy is associated with obesity, dietary choices and exercise.[12] Low health literacy is also associated with having an inadequate understanding of complex medical information.[13,14] Patients’ understanding of their disease, treatment, and healthcare decision-making can be impaired by low health literacy.[4]
Inadequate health literacy has been shown to negatively impact health-related quality of life in patients with cancer of the breast, lung, colorectal, prostate, and head and neck.[6,15–17] In general patient populations, low health literacy has been related to inadequate utilization of health care services, higher mortality, worse self-rated health, and poorer physical functioning.[17–19] Health literacy is a particularly important issue for cancer patients who must navigate a complex health care system after being diagnosed with a potentially life-threatening condition.[17,20]
Health literacy is based on skills of the individual patient and also on the communication skills of health care providers.[1] The investments that health care organizations make in reducing health literacy-related barriers within their systems also play a role. Health literacy interventions such as information handouts, audiovisual offerings and online resources have been found to improve patients’ health literacy and adherence to treatment.[1,21] Having a care coordinator is also likely to be helpful.[20] Effective interventions to improve health literacy may include interventions to improve patient-provider communication or to develop skills in low literate people.[5]
With respect to limitations, the results may not be generalizable to all cancer survivors in the United States because of the low response rate. In addition, only 7 states implemented the module on health literacy. The use of self-reported information is also a potential limitation.
In conclusion, a sizeable percentage of cancer survivors have low health literacy which is likely to complicate their ability to self-manage their disease and navigate the health care system for optimal care. In order to ensure the quality and appropriateness of cancer survivorship care, effective interventions are needed to address low health literacy in these populations.[9,20]
Author contributions
Conceptualization: Steven Coughlin.
Data curation: Biplab Datta.
Formal analysis: Biplab Datta.
Writing – original draft: Steven Coughlin.
Writing – review & editing: Steven Coughlin, Biplab Datta, Marlo Vernon, Christos Hatzigeorgiou, Varghese George.
Footnotes
Abbreviation: BRFSS = behavioral risk factor surveillance system.
How to cite this article: Coughlin SS, Datta B, Vernon M, Hatzigeorgiou C, George V. Health literacy among cancer survivors: results from the 2016 behavioral risk factor surveillance system survey. Medicine. 2022;101:9(e29010).
The authors have no conflicts of interests to disclose.
The datasets generated during and/or analyzed during the current study are publicly available.
References
- [1]. Rafferty AP, Luo H, Winterbauer NL, Bell RA, Little NRG, Imai S. Health Literacy Among Adults With Multiple Chronic Health Conditions. J Public Health Manag Pract 2022;28:E610–4. [DOI] [PubMed] [Google Scholar]
- [2]. Institute of Medicine. Health Literacy: A Prescription to End Confusion.. Washington, DC: National Academies Press; 2004. [PubMed] [Google Scholar]
- [3]. Hersh L, Salzman B, Snyderman D. Health literacy in primary care practice. Am Fam Physician 2015;92:118–24. [PubMed] [Google Scholar]
- [4]. Berkman ND, Sheridan SL, Donahue KE, et al. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011;155:97–107. [DOI] [PubMed] [Google Scholar]
- [5]. Rowlands G, Shaw A, Jaswal S, et al. Health literacy and the social determinants of health: a qualitative model from adult learners. Health Promot Int 2017;32:130–8. [DOI] [PubMed] [Google Scholar]
- [6]. Wei C-W, Wu M-L, Tung H-H. Relationship between health literacy and quality of life among survivors with breast cancer. Int J Nurs Pract 2021;27:e12922. [DOI] [PubMed] [Google Scholar]
- [7]. Coughlin SS, Chen J, Cortes JE. Health care access and utilization among adult cancer survivors: results from the National Institutes of Health “All of Us” Research Program. Cancer Med 2021;10:3646–54. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [8]. Kenzik KM. Health care use during cancer survivorship: review of 5 years of evidence. Cancer 2019;125:673–80. [DOI] [PubMed] [Google Scholar]
- [9]. Housten AJ, Gunn CM, Paasche-Orlow MK, et al. Health literacy interventions in cancer: a systematic review. J Cancer Educ 2021;36:240–52. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [10]. Weiss SM. Smith-Simone SY Consumer and health literacy. The need to better design tobacco cessation product packaging, labels, and inserts. Am J Prev Med 2010;38 (3S):S403–13. [DOI] [PubMed] [Google Scholar]
- [11]. Bennett IM, Chen J, Soroui JS, et al. The contribution of health literacy to self-rated health status and preventive health behaviors in older adults. Ann Fam Med 2009;7:204–11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [12]. Magnani JW, Mujahid MS, Aronow HD, et al. Health literacy and cardiovascular disease: fundamental relevance to primary and secondary prevention. A Scientific Statement from the American Heart Association. Circulation 2018;138:e48–74. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [13]. Davis TC, Williams MV, Marin E, et al. Health literacy and cancer communication. CA Cancer J Clin 2002;52:134–49. [DOI] [PubMed] [Google Scholar]
- [14]. Halverson J, Martinez-Donate A, Trentham-Dietz A, et al. Health literacy and urbanicity among cancer patients. J Rural Health 2013;29:392–402. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [15]. Nilsen ML, Mskovitz J, Lyu L, et al. Health literacy: impact on quality of life in head and neck cancer survivors. Laryngoscope 2020;130:2354–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [16]. Clarke N, Dunne S, Coffey L, et al. Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors. J Cancer Survivorship 2021;15:855–65. [DOI] [PubMed] [Google Scholar]
- [17]. Halverson JL, Martinez-Donate AP, Palta M, et al. Health literacy and health-related quality of life among a population-based sample of cancer patients. J Health Commun 2015;20:1320–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [18]. Berkman ND, Sheridan SL, Donahue KE, et al. Low health literacy and health outcomes: an updated systematic review. Ann Internal Med 2011;155:97–107. [DOI] [PubMed] [Google Scholar]
- [19]. Smith SG, O’Conor R, Curtis LM, et al. Low health literacy predicts decline in physical function among older adults: findings from the LitCog cohort study. J Epidemiol Community Health 2015;69:474–80. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [20]. Del Vecchio NJ, McDowell BD, Carter KD, et al. Relationships between health literacy, having a cancer care coordinator, and long-term health-related quality of life among cancer survivors. Support Care Cancer 2021;29:7913–24. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [21]. Miller TA. Health literacy and adherence to medical treatment in chronic and acute illness: a meta-analysis. Patient Educ Couns 2016;99:1079–86. [DOI] [PMC free article] [PubMed] [Google Scholar]