The Sleep Disorders Patient and Health Literacy

The Sleep Disorders Patient and Health Literacy

Low health literacy impacts all of society across all demographic groups.1 Considering the complicated terminology routinely used in sleep medicine, it is reasonable to presume that many of us in the Sleep industry have experienced situations where patients did not understand information they were given by us regarding diagnosis and treatment. Why they did not understand us may very well be linked to low health literacy skills, and moving forward to diminish confusion and correct how we deal with these misunderstandings requires concerted efforts on the part of health care professionals.

The Institute of Medicine (IOM) of the National Academies reports that nearly half of all American adults _ 90 million people _ have difficulty understanding and using health information, and there is a higher rate of hospitalization and use of additional health services among patients with limited health literacy. Low health literacy may lead to billions of dollars in avoidable health care costs.2

Where patient adherence to treatments for sleep disorders is concerned, the time is now more important than ever considering equipment reimbursement directives that have recently transpired. It is certainly no secret that continuous positive airway pressure (CPAP) treatment has not been adhered to by some obstructive sleep apnea (OSA) patients, and it is reasonable to assume that many of these very noncompliant patients had low literacy levels that compounded acclimation difficulties. Although “adherence” has not clearly been defined by the Centers for Medicare and Medicaid Services (CMS), the March 2008 National Coverage Determination (NCD) policy, Continuous Positive Airway Pressure Therapy for Obstructive Sleep Apnea states that CPAP will initially be covered for patients diagnosed with OSA for 12 weeks. After 12 weeks, coverage will be limited to patients whose OSA is improved as a result of using CPAP.3 If patients cannot understand the fundamentals of acclimation to CPAPthrough appropriate patient education, they may not tolerate CPAP, thus being at risk for losing their equipment, not to mention losing their lives due to the consequences of untreated OSA.


Consider this scenario: Apatient that had recently undergone a sleep study called the sleep center. “You said that I was going to feel better if I wore this ‘CPAC,’ but I still feel terrible and am drowsy all day long even though I have been wearing the mask every night since I left your lab earlier this week,” the patient said. The sleep technologist told the patient she would get back to him after talking with the home medical equipment (HME) company. The HME representative told the technologist that there had been setup scheduling difficulties, and that the patient was being set up with his CPAP unit the next day. So, as it turned out, the patient had been wearing only the sample mask given to him by the sleep lab. It is not known whether this patient has low literacy skills or not, and realistically, this could happen to any patient.

What follows is an excerpt from the publication “What Did The Doctor Say?:” Improving Health Literacy to Protect Patient Safety by the Joint Commission in 2007:

It is likely that almost everyone has been, at some time, put off by densely worded forms, and confused by complex medical regimens, conflicting health care advice, poorly worded instructions, and medical speech that few on the receiving side of health care can understand. Many leave the doctor’s office with questions unspoken and unanswered, either because they do not want to appear unknowledgeable or feel that their questions…will be unwelcome.

Language barriers and cultural clashes also inhibit effective bilateral communications, leaving both sides of the care equation short-changed of information that is necessary to the provision of safe, high-quality care. Interpreter services are essential and can break down barriers, but care providers still need to grasp where their patients are “coming from.”

Providing the best possible care for patients requires real communication,4 not just words. Giving special care to patients with low health literacy issues requires spending extra time on patient education and bed partner or family education as well.5 Patients greatly value the “information-giving” time, and this time is shrinking in practice settings that seem to equate time with money. Appropriately attending to the health literacy needs of all patients is a virtuous task. Clinic directors and hospital administrators may find it very difficult to provide patient education due to reimbursement constraints. The fact that patient education can also play a part in cost containment is of little help at first, because it requires money to bring patient education to reality in terms of additional staffing.

Reimbursement for patient education is problematic. Patient education that is integral to care, part of the treatment plan, and delivered under the supervision of a physician has been and continues to be allowable as an administrative expense under nearly all third-party payer policies; yet it is still rare to find specific patient education programs, other than diabetes patient education, reimbursed as a separate service.

Even though Current Procedural Terminology (CPT) codes exist for group counseling sessions, most public and private insurance plans do not provide separate coverage for these services. Codes only establish a mechanism for billing; they cannot guarantee third-party reimbursement. Considering this is their area of specialty, billing and coding consultants can offer great insight for administrators and clinic directors when they are looking for reimbursement strategies and fixes in the sleep disorders arena.

Available Resources

Until providers find financial resources to deal with the health literacy problems in their practices, there are some simple things that can be done. Among many solutions is “Ask Me 3.” It is trademarked by the Partnership for Clear Health Communication and is a patient education program designed to promote communication between health care providers and patients, in order to improve health outcomes. It is spearheaded by an unprecedented national coalition of provider groups, patient advocates and health care organizations as they advocate clear communications, work together to promote awareness, and find solutions around low health literacy issue and its effect on health outcomes. Through patient and provider education, materials developed by leading health literacy experts, Ask Me 3 promotes three simple but essential questions that patients should ask their providers in every health care interaction. Providers should always encourage their patients to understand the answers to: What is my main problem?; What do I need to do?; and Why is it important for me to do this? More information may be obtained through the Partnership for Clear Health Communication at the National Patient Safety Foundation.

Whatever is done about improving low health literacy, education and patient care must remain the focus.6 We should not forget that patient education IS patient care.

Author’s Bio: Theresa Shumard is Sleep Advocate & Manager of Clinical Services and Education for DeVilbiss Healthcare. Also a longtime sleep technician, she is the host of “Let’s Talk Sleep” an Internet-based radio program for the Sleep Disorders Professional Community, and hosts an Internet blog that serves as an educational resource to sleep professionals. She is an officer of the National Patient Educators Network (NPEN), and selected for the 2003 Coalition for Allied Health Leadership where her concentration was health literacy.

She is an international lecturer in the areas of drowsy driving prevention, disease management, treatment compliance, health literacy, patient education and social issues sometimes associated with CPAP therapy, sleep technologist professional development measures, trends and applications of sleep technology, and strategies to decrease allied health workforce shortages. Shumard is an Associated Press Award winning writer and is involved with activities related to the American Medical Writers Association.

Theresa Shumard
Sleep Advocate
Manager of Clinical Services and Education
DeVilbiss Healthcare
Shillington, PA


1. Wallace LS. The Impact of Limited Literacy on Health Promotion in the Elderly. Californian Journal of Health Promotion 2004, 2:3,1_4.
2. Committee on Health Literacy, Board on Neuroscience and Behavioral Health. Health Literacy: A Prescription to End Confusion. L Nielsen-Bohlman, AM Panzer, DA Kindig, Eds. Washington DC: National Academies Press, 2004.
3. Decision Memo for Continuous Positive Airway Pressure (CPAP) Therapy for Obstructive Sleep Apnea (OSA). Center for Medicare and Medicaid Services (CMS) National Coverage Determination (NCD). March 13, 2008, (CAG-00093R2).
4. Ley P. Doctor-patient communication: some quantitative estimates of the role of cognitive factors in non_compliance. J Hypertension. 1985;3:51_55.
5. Ashtyani H, Hutter D. Collateral damage: the effects of obstructive sleep apnea on bed partners. Chest 2003;124:780_781.
6. Walker LM. Patient education: do it right, and everyone wins. Med Econ. 1992;69:155_158, 160_163.

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