Low health literacy is a pivotal concern for the provision of adequate medical care across the spectrum of chronic conditions, and obstructive sleep apnea (OSA) falls under this umbrella. In view of the fact that most OSA patients also have a comorbid disorder, this issue is even more compelling to ensure patients understand their conditions and the importance of treatment.1
As noted by Jamil,2 compared to 23 industrialized countries, "the United States scored below the international average for literacy, numeracy and problem solving." According to the Centers for Healthcare Strategies,3 in the U.S., poor health literacy is estimated at 36% and costs the country $236 billion a year. A 2020 report by United Healthcare4 found that in the Medicare population, better health literacy improves safety, the patient experience, medical outcomes and overall quality of life.
But what is health literacy? The Centers for Disease Control and Prevention (CDC) define it as "the degree to which individuals have the ability to find, understand and use information and services to inform health-related decisions and actions for themselves and others."5 In addition, it is important to keep in mind numeracy, which also can impact one's ability to comprehend information. Again, looking to the CDC, "numeracy is the ability to access, use, interpret and communicate mathematical information and ideas to engage in and manage mathematical demands of a range of situations in adult life."6 In sleep medicine, we use terms in our conversations with patients, which require an understanding of numeracy. For instance, apnea-hypopnea index (AHI), oxygen desaturation index (ODI) and total sleep time (TST). We also use terms such as compliance or adherence with respect to a percentage of continuous positive airway pressure (CPAP) usage, but many people do not understand these concepts and it can be confusing. It is a lot for people to think about.
Adding to health literacy issues, it is also important to consider the notion of treatment burden. Treatment burden is defined as "the work that patients must do to implement management of care."7 This includes making time for appointments, obtaining medication or other treatment and making lifestyle changes (exercise, grocery shopping, etc.). When one has low health literacy, therefore difficulty understanding what to do, the treatment burden can be extremely high.
Many individuals are embarrassed by their inability to read and/or write, to understand forms or directions and have difficulty asking for help. There are many reasons for low health literacy, which include older age, culture, English as a second language, social economic situation, level of education and other social determinants of health. Social determinants of health can have dramatic impacts on health literacy.8 With regard to sleep, if one lives in an environment that does not promote or provide the ability for optimal sleep, sleep deprivation may contribute to one's inability to comprehend and be actionable on their health. Similar to food deserts, I call these "sleep deserts," where there is not adequate opportunity to sleep or access to conditions which promote good sleep. Difficult sleep conditions (e.g., bed sharing, sleeping on couches, violent neighborhoods) are not uncommon. These circumstances can and do have a harmful impact on a person's ability to sleep and therefore may impact one's ability to optimally function. There may also be sleep illiteracy, in other words, people do not understand the importance of sleep and the impacts on the lack thereof.9
How does low health literacy impact the community of OSA patients and how can we help?
In 1998, Dr. Andrew Chesson10 conducted a study regarding reading levels of brochures for OSA patients. He assessed patient facing materials from the then American Sleep Disorders Association (ASDA) and the National Sleep Foundation (NSF). His research found that few met any of the readability criteria, which is needed for patients to comprehend their diagnosis and treatment. What his team found was that the reading level of the language in the brochures was too high for most people and these materials were difficult to comprehend.
In a 2021 article by Robbins et al,11 20 web-based patient education materials (PEMs) from a variety of sources including medical device manufacturers (ResMed), the American Academy of Dental Sleep Medicine (AADSM), American Academy of Sleep Medicine (AASM) and American Thoracic Society (ATS) among others were researched. They used a variety of evaluation resources including the CDC's Clear Communication Index (CCI), the Patient Education Materials Assessment Tool (PEMAT), Simple Measure of Gobbledygook (SMOG) and Flesch-Kincaid readability. What they found is that little has changed over the past 25 years. While there were some bright spots, very few PEMs met the requirements for ease of use, readability or other score measures. Though Chesson's group reviewed available brochures and Robbins' group, internet-based materials, the outcome was similar. A likely one-third of patients cannot understand the PEMs provided to them or accessed via the internet. How patients read materials from the internet differs from written materials, thus if your organization is using both options to provide information, different approaches may need to be used.
This is important research. It is known that suitably written and thoughtful materials can enhance self-efficacy, self-agency and therefore promote better health outcomes. The sleep health field has work to do!
More and more individuals are now using the internet to seek health information. A recent publication by the U.S. Department of Commerce National Telecommunication and Information Administration12 found that more than 50% of households use the internet for any type of health care related information. They also found that individuals who use telehealth have higher incomes, are more likely to be educated and live in metropolitan areas. These findings are in alignment with lower health literacy facts as well.
If we think about the impact of sleep disorders on sleep itself, we know that sleep deprivation negatively affects executive function, memory and decision-making.13 Combine sleep deprivation with low health literacy, and it is no wonder that sleep patients have difficulty in self-management and care in the home. We also know that the current health care payor environment does not seem to value the importance of this aspect of sleep health care. Little reimbursement is available for patient education, training and followup care in sleep health, in particular for patients with OSA. In other medical specialties such as endocrine (diabetes) and cardiology, patients are provided with adequate resources to be successful, including payment for diabetic educators and cardiac rehabilitation services.
Data supports that better health literacy improves OSA outcomes.14,15 More advocacy by our field and patients is needed to move the payment needle forward. The cost burden of OSA alone to the U.S. is estimated at over $90 billion16 and thus it deserves payors' attention.
As frontline sleep health care providers, what can be done?
First, we can look to ourselves, particularly our behavior when speaking to patients. Do we value their opinion and that they are capable of making the decision that is right for them? Are we humble? Do we listen to what they have to say? These are just a few questions to ask ourselves. (A good overview on communication techniques can be found on a blog from Tulane School of Public Health.17)
It is also important to look to your organization. Do they have a health literacy team? How are patient education materials reviewed? According to Healthy People 2030,18 "organizational health literacy is the degree to which organizations equitably enable individuals to find, understand and use information and services to inform health-related decisions and actions for themselves and others." Thus, organizations have a duty to provide patients the information in understandable form to enable them to be proactive in their care. Having patients review materials produced by organizations is an effective way to elicit feedback and engage the community.
Clinicians can take the time to learn techniques such as the "Teach Back" method (see link below), understand the importance of asking open-ended questions and maintain a seated and open posture. This technique allows for patients and practitioners to be on the same physical level. We can also review and revise PEMs to meet a sixth-grade reading level. Look for signs of low health literacy such as inability to complete forms or statements such as "I forgot my glasses; I will take it home to read." Also, lack of adherence to recommendations such as missing appointments and recommended follow up are cues that can indicate a patient with low health literacy. It is not always just about a mask.
In conclusion, as sleep health professionals, we can do our part by critically reviewing patient education materials we provide to our patients, whether written or on the internet, and locate the most understandable information for patients across the spectrum of health literacy levels. We can educate ourselves on communication skills and obtain training. Communication and health literacy go hand in hand, and we can make a difference! It takes courage to change the status quo, but little by little, it can be done.
While writing this piece and doing the research, I came across a several valuable resources which are quick to review, interact with and to learn from. Arming ourselves with knowledge and obtaining training, is crucial to helping patients close the gap with regards to their understanding about sleep and associated disorders. I hope you find them helpful.
- Centers for Disease Control and Prevention
- Health Literacy Online: A Guide for Simplifying the User Experience
- Institute for Healthcare Advancement (IHA): Always Use Teach Back
- Agency for Healthcare Research and Quality Health Literacy
- National Academy of Medicine: Identifying Credible Sources of Health Information in Social Media: Principles and Attributes
- Bonsignore, MR, et al. Obstructive sleep apnea and comorbidities: A dangerous liaison. Multidisciplinary Respiratory Medicine. 2019;14.1:1-12.
- Jamil, SM. Do Patient Education Materials in Sleep Apnea Hit the Target? ATS Scholar. 2022;3.1:1-4.
- Center for Healthcare Strategies. Health Literacy Fact Sheets. Retrieved from: https://www.chcs.org/resource/health-literacy-factsheets/. Accessed 6 July 2022.
- United Healthcare Health Literacy Key to Better Health Outcomes. Retrieved from: https://www.unitedhealthgroup. com/newsroom/research-reports/posts/health-literacy-research-462863.html?cid=S M:Twitter:OA:10.26.20:video:organic:NAT:HealthLiteracy3. Accessed 6 July 2022.
- Centers for Disease Control and Prevention. What Is Health Literacy? Retrieved from: https://www.cdc.gov/healthliteracy/learn/index.html. Accessed 2 July 2022.
- Centers for Disease Control and Prevention. Understanding Literacy & Numeracy. Retrieved from: https://www.cdc.gov/ healthliteracy/learn/UnderstandingLiteracy.html. Accessed 3 July 2022.
- Dobler CC. Treatment burden is important to patients but often overlooked by clinicians. Breathe. 2021;17.1.
- Schillinger D. The Intersections Between Social Determinants of Health, Health Literacy, and Health Disparities. Studies in health technology and informatics 269;2020:22-41. doi:10.3233/SHTI20002
- Bonuck KA et al. Sleep health literacy in head start families and staff: Exploratory study of knowledge, motivation, and competencies to promote healthy sleep. Sleep Health. 2016;2,1:19-24. doi:10.1016/j.sleh.2015.12.002
- Chesson, AL Jr et al. Presentation and reading level of sleep brochures: Are they appropriate for sleep disorders patients? Sleep. 1998;21,4:406-12. doi:10.1093/sleep/21.4.406
- Robbins R et al. A Health Communication Assessment of Web-based Obstructive Sleep Apnea Patient Education Materials. ATS Scholar. 4 Jan. 2022;3,1:48-63. doi:10.34197/ats-scholar.2021-0055OC
- National Telecommunications and Information Administration United States Department of Commerce. More than Half of American Households Used the Internet for Health-Related Activities in 2019, NTIA Data Show. Retrieved from https://www.ntia.gov/blog/2020/more-half-americanhouseholds-used-internet-health-related-activities-2019-ntia-data-show. Accessed 6 July 2022.
- Aidman E, Jackson SA, Kleitman S. Effects of sleep deprivation on executive functioning, cognitive abilities, metacognitive confidence, and decision-making. Appl Cognit Psychol. 2019;33:188-200. https://doi.org/10.1002/acp.3463
- Ellender CM et al. Adequate health literacy is associated with adherence to continuous positive airway pressure in adults with obstructive sleep apnea. Sleep Advances. 2021;2.1:zpab013.
- Li JJ et al. The relationship between functional health literacy and obstructive sleep apnea and its related risk factors and comorbidities in a population cohort of men. Sleep.1 Mar. 2014;37.3:571-8. doi:10.5665/sleep.3500
- Huyett P and Bhattacharyya N. Incremental health care utilization and expenditures for sleep disorders in the United States. Journal of Clinical Sleep Medicine. 2021;17.10:1981-1986.
- Tulane University, School of Public Health and Tropical Medicine. Strategies for Effective Communication in Health Care. Retrieved from: https://publichealth.tulane.edu/blog/ communication-in-healthcare/. Accessed 5 July 2022.
- Healthy People 2030. Health Literacy in Healthy People 2030. Retrieved from: https://health.gov/ healthypeople/priority-areas/health-literacy-healthy-people-2030#:~:text=Health%20literacy%20is%20a%20central,well%2Dbeing%20of%20all.%E2%80%9D. Accessed 6 July 2022.