Misunderstanding diagnostic sleep testing instructions and therapeutic interventions is leading to poor health outcomes.

 Scenario: A physician’s office during a patient intake interview to determine medical history.

Health care professional: “Do you presently take any medications?”

CPAP patient (without prescribed oxygen): “I have sleep apnea, so I get oxygen out of a mask every night.”

Does this sound familiar? During a recent lecture I was presenting to a group of health professionals, I asked how many of them had ever heard a patient say the above. Nearly every hand in the room went up. One woman, who works at a durable medical equipment facility performing continuous positive airway pressure (CPAP) setups, said that a patient recently asked her where he was supposed to “pour in the gasoline that would be needed to power [his] new CPAP unit.”

Others in the audience shared similar accounts of patients misunderstanding diagnostic sleep testing instructions or therapeutic intervention, thus very likely leading to poor health status and outcomes. Some patients missed sleep center appointments completely because they could not read appointment cards. Some put their CPAP units in the closet never to be used because they could not read the instructions. They were too embarrassed to call the health provider for assistance or reclarification.1

Age, ethnicity, income, or education levels, rather than health literacy, are perhaps more widely perceived as forecasters of a person’s health status and risk profile. In actuality, this nontraditional indicator is directly linked to adverse health effects, and needs to appear on the health care provider’s radar screen. According to recent data, although it is sometimes possible to recognize behaviors or responses that indicate limited health literacy, a “universal precautions” approach that avoids assumptions about any patient’s health literacy is essential to assure the best possible health outcomes.

By definition, health literacy is the ability to read, understand, and effectively use basic medical instructions and information. Patients with sleep disorders are among those whose health may be at risk because of their difficulty in understanding and acting upon health information.2 In fact, sleep professionals may not even know that these patients are in their laboratories because people with low literacy skills are often embarrassed and ashamed to admit they have difficulty understanding health information or instructions. According to the National Adult Literacy Survey (NALS) report by the National Center for Education Statistics and the Division of Adult Education and Literacy, Institute of Education Sciences within the US Department of Education,3 these people have mastered using well-practiced coping mechanisms that effectively mask their problems. People with low health literacy are often less likely to comply with prescribed treatment and self-care regimens.

Considering how increasingly complex the medical industry has grown, the ever-increasing array of medications on the market, and the health care reimbursement and work force shortage climate today, patients are being asked to undertake more complicated self-care regimens. For instance, let us look at patients with congestive heart failure. In the past, these patients were merely asked to reduce physical activity. Today, they are asked to perform a plethora of tasks from weighing themselves regularly and recording details to eating a low-sodium, low-fat diet, while participating in regular exercise regimens. Sometimes a mismatch between a caregiver’s communication level and the patient’s comprehension level may contribute to the problem. Patients often misinterpret information and may not understand what is explained to them.

It is with this premise in mind that health care leaders understand the need for awareness among sleep health professionals about this significant circumstance. Inadequate health literacy adversely affects health care outcomes and the quality of life of 90 million Americans and costs the health care system $73 billion annually.4

The American Medical Association (AMA), the Institute of Medicine (IOM), and Pfizer Inc are among national organizations and corporations responsible for Health Literacy Initiatives. The Partnership for Clear Health Communications, convened by Pfizer, is a coalition of national medical, nursing, pharmacy, and public health groups working collaboratively to promote awareness of the effects of inadequate health literacy and strategies to radically impact its negative health consequences.5 A patient education program on the AskMe3.com Web site was developed by the partnership as a solution-based initiative to address inadequate health literacy.

In an effort to raise awareness of health literacy issues within the primary care provider community, the AMA Foundation is initially focusing on physicians, nurses, and pharmacists. The foundation’s key tool for informing health care professionals and patient advocates about health literacy is its Health Literacy Educational Kit.4 The kit includes a manual for clinicians, a video documentary, reprintable information, continuing medical education credit, and additional resources for education and involvement.

The IOM assembled a work group in 2002 to assess the problems of health literacy and to set goals for health literacy efforts within a public health/public education framework (as opposed to primary care approaches), by clarifying the root problems that underlie health illiteracy, identifying barriers to creating a health-literate public, assessing approaches that have been attempted, and suggesting new approaches to conquer the obstacles to health literacy.6

Why is health literacy awareness important to health care workers?
Chances are high that some of your patients are among the 90 million people in the United States whose health may be at risk because of difficulty in understanding and acting on health information.
Current Data Indicate
As many as half of American adults:
• Lack sufficient general literacy to effectively undertake and execute medical treatments and preventive health care they need
• This impacts all of society across all demographical groups
• Economic consequences of limited health literacy cost $50 to $73 billion per year

Measuring Level of Consciousness
Current strategies addressing inadequate health literacy primarily target physicians, nurses, and pharmacists, but omit the allied health practitioners actually responsible for providing the majority of patient services.7 This information incited a project by a Coalition for Allied Health Leadership (CAHL) team whose goal was to measure the level of consciousness about inadequate patient health literacy among allied health professionals—such as polysomnographic technologists—rather than nurses, physicians, or pharmacists. I was fortunate enough to participate as a team member and work on the project. CAHL provides an opportunity for associations to develop future leaders for the allied health community in practice, education, and research.

Health literacy enabled a CAHL linkage with the AMA and IOM as team members reviewed the AMA’s health literacy training kit, and polled allied health professionals and associations on their awareness of health literacy issues and teaching methods. Deliverables included recommendations for education of allied health professionals regarding literacy difficulties that impact patient safety, health outcomes, quality of life, and unnecessary costs. Less than one third of all respondents were aware of the issues surrounding health literacy or that health literacy resources are available, or had institutional policy or goals to address health literacy. Our team published its research in the Journal of Allied Health in June 2004.7

The CAHL team consisted of individuals who are delegate members of associations that support the initiative from the Association of Schools of Allied Health Professions (ASAHP), the Health Professions Network (HPN), and the National Network of Health Career Programs in Two-Year Colleges (NN2). CAHL is supported by a cooperative grant issued by the Bureau of Health Professions, US Department of Health and Human Services. The team included Daniel R. Brown, PhD, Santa Fe Community College, Gainesville, Fla, and Deborah Durham, MPA, Temple College, Temple, Tex, both of NN2; Rebecca Ludwig, PhD, University of Arkansas for Medical Sciences, Little Rock, and Geraldine A. Buck, MHS, Drexel University, Philadelphia, both of ASAHP; and Theresa Shumard, Association of Polysomnographic Technologists, Shillington, Pa, and Susan S. Graham, MS, State University of New York Upstate, Syracuse, both of HPN.

The preliminary conclusion of the study stated that there is substantial opportunity to increase awareness of the impact of health literacy, to develop and assess institutional policies toward health literacy, and to create new resources to promote it within the allied health professions.

Implications of the CAHL team’s research revealed that health literacy impacts every patient interaction in every clinical situation as follows.

“Best practices in medicine are useless if patients do not understand how to follow the care regimens needed to address their health problems. Even well educated patients may not understand medical jargon and many are unlikely to admit that they need clarification. The findings from this preliminary study suggest that allied health care providers are essentially unaware of the issues related to health literacy, or the resources available for improving communication with their patients. Increasing the awareness among allied health professionals on the adverse effects related to inadequate patient communication and strategies for increasing patient understanding holds the greatest potential for improving medical outcomes. Just as all health care providers use universal precautions to protect against the spread of infectious organisms, health care providers should use a universal approach to health literacy—not assume patient competence with health literacy to protect against inadequate communication with their patients that may hinder or prevent the benefits expected from medical care.”

Things you might say that a sleep patient perhaps misunderstands
How would you reword the following?

  • You’re going to have a polysomnogram.
  • I’m going to put sensors on you.
  • You should always practice good sleep hygiene.
  • While you are asleep, the leads on your body will be connected to a head box.
  • We are also doing this test to rule out cataplexy.
  • This machine I’m testing you on will splint your upper airway.
  • You will be exposed to bright lights with enough lux to mimic the sun’s rays.
  • Wear appropriate sleeping attire. You will have leads glued to your scalp.
  • I will be watching you sleep and dream.
  • I will be monitoring your electrical impulses for signal tracings.

Recommendations were based on the outcomes in the pilot study, and the CAHL Health Literacy Project Team proposed the following:

1. Future CAHL team(s) continue the Health Literacy project by conducting full-scale surveys of health literacy practices and needs within the allied health community and develop needs-based health literacy resources such as brochures or videos specifically targeted to the allied health professions

2. CAHL health professionals and educators promote, support, and disseminate health literacy initiatives within their respective professional organizations, clinical practices, and institutions

3. CAHL educators and health professionals lobby educational accreditors and health policy makers to include health literacy requirements in educational, clinical, and professional standards

4. CAHL health professionals and educators solicit national coalitions such as the Partnership for Clear Health Communication and the IOM to include allied health professionals on their advisory boards, in the development of health literacy materials, and in their publications.

Theresa Shumard is a board member of the Association of Polysomnographic Technologists (APT); editor-in-chief of APT’s magazine, The A2Zzz; APT Legislative Action Committee cochair; international lecturer; coordinating team member of the Allied Health Professions Network; 2003 Coalition of Allied Health Leadership nominee; and a medical journalist. She may be reached at [email protected].  

1. Schwartzberg J, Lagay F. Health literacy: what patients know when they leave your office or clinic. American Medical Association, June 2001. Available at: http://www.ama-assn.org/ama/pub/category/5154.html. Accessed on June 18, 2004.
2. Weiss BD. Health Literacy: A Manual for Clinicians. Chicago: American Medical Association Foundation; 2003.
3. Kirsch I, Yamamoto K, Norris N, et al. Technical Report and Data File Users Manual for the 1992 National Adult Literacy Survey. National Center for Education Statistics, 2000. Available at: http://nces.ed.gov/naal/design/about92.asp. Accessed on June 18, 2004.
4. AMA Foundation Health Literacy Campaign. Available at: http://www.ama-assn.org/ama/pub/category/8115.html. Accessed on June 18, 2004.
5. Partnership for Clear Communication. Available at: http://www.ama-assn.org/ama/pub/category/11121.html. Accessed on June 18, 2004.
6. Health Literacy. Washington, DC: Institute of Medicine Board on Neuroscience and Behavioral Health Project Identification Number BNBH-H-01-03-A; 2002. Available at: http://www4.nas.edu/webcr.nsf. Accessed on June 18, 2004.
7. Brown D, Ludwig R, Buck GA, Durham D, Shumard T, Graham SS. Health literacy: universal precautions needed. J Allied Health. 2004;33:150-155.