According to Ganguli and Ferris (1), in the United States, health care remains fragmented, poorly communicated, and expensive. This disconnected health care system creates an environment of patients who are unable to self-manage their care. As more health care is shifted to the home and includes not only the patient but the family as well, it is important to develop mechanisms to improve support of self-management programs and patient outcomes for patients with sleep disorders (2).

Sleep health educators can make a meaningful difference in patients and the community. Obstructive sleep apnea (OSA) is a modifiable risk factor for cardiovascular, endocrine, and neurocognitive dysfunction (3). Sleep health educators can improve adherence to treatment and quality of life. In addition to helping sleep disorders patients, the field has a fiduciary duty to promote healthy sleep in the community. Sleep health professionals possess the knowledge to support treatment efforts.

Our counterparts in diabetes and asthma treatment have garnered support of the medical community to provide important self-management support including education, navigation, and care coordination for patients with these conditions. This has not been the case for our profession.¹

The role of patient education cannot be adequately summarized in a chapter—it is a complex intertwining of characteristics of the patient and clinician, including gender, learning theories, age, and materials as well as the social determinants of health. According to Barnason et al. (4), therapeutic patient education can be defined as “an approach to facilitate patient and family learning about the treatment of disease and the adoption of self-management behaviors and lifestyles to improve physical and psychosocial health outcomes.” Sleep health educators can be instrumental in educating sleep disorder patients in order to promote long-term adherence to sleep therapy.

Patient adherence to medical recommendations is complex and multifactorial. Simply put, adherence means “sticking to treatment” or following the instructions provided by the medical team. Adherence can be broken down into several components, including the cost of therapy, health literacy, language barriers, difficulty in therapy, age, and access to care (5). Individual predictors of adherence are difficult; thus, tailoring approaches to each person may require a multimodal approach (6, 7) including various teaching techniques, and family and community resources. In 2003, the World Health Organization (WHO) (8) published its report on adherence. In a nutshell, lack of adherence leads to increased health care costs, patient safety issues, and overall poorer quality of life—all of which sleep health professionals should be concerned with.

The WHO (8) states, “Increasing the effectiveness of adherence interventions may have a far greater impact on the health of the population than any improvement in specific medical treatments.” And indeed, for patients with OSA, a Cochrane review (9) indicated that there were few clinical advantages to a variety of “comfort”-enhancing features such as humidification and reduction of expiratory pressure. However, another Cochrane review (10) assessed the effectiveness of education and behavioral interventions, and although the data were mixed and the overall quality of the studies assessed was low to moderate, in patients who were naïve about continuous positive airway pressure (CPAP), such interventions resulted in improved usage. Both reviews indicated that more studies were needed to assess these issues.

The literature supports that adherence to sleep apnea therapy is poor, estimated between 23% and 84%, and has not changed much over the past 20 years. However, there are varying definitions for adherence ranging from 4 to 7 hours per night (11, 12). Luga and McGuire (13) conducted a review of the literature regarding medication adherence and health care costs mainly assessing chronic illness such as chronic obstructive pulmonary disease and congestive heart failure. They indicate that medication nonadherence ranges from 25% to 50%, similar to CPAP adherence. Their review concludes that adherence can improve health outcomes and health care cost expenditures. Indeed, a recent article by Truong et al. (14) found that compared with nonadherers, adherence to CPAP was associated with a significantly lower all-cause 30-day hospital readmission rate.

The role of the clinical sleep educator within our profession is evolving and there are many designations for individuals who provide these services within a clinic or hospital. Although there may be differing titles, the patient-centered goals are the same: to provide the right care, to the right patient, at the right time (15). In addition, the goal is also to improve adherence to sleep treatment, regardless of the condition, by providing patients with the necessary tools for self-management at home. Although there is no one distinct definition for the role, core competencies exist for the sleep health educator, which include assessing the patient’s educational needs and providing education appropriately, the ability to counsel patients with regard to treatment options, providing access to community-based resources, and developing patient education materials (16).

For individuals in this role, it is not only about providing education about a specific topic or condition or training on a device but really truly understanding the patient’s preferences, concerns, and limitations. When patients enter the support “wasteland” called home, it is often difficult for them to perform self-management, which is what is expected of them. The sleep health educator can do much to mitigate this issue by providing much-needed support in a variety of ways.

Person- or patient-centered care refers to incorporating shared decision making (SDM), care coordination and accessibility, top-down commitment to ensuring alignment with patient-centered goals, family inclusion, consideration of social determinants of health, and information sharing. Almeida et al. (17) in their focus groups found that patients have a variety of factors that influence their response to therapeutic decisions including side effects and impact to bed partners. By providing a more patient-focused approach rather than a one-size-fits-all approach, the patient may be more adherent to therapy. Value in providing patient-centered care has been demonstrated in improved patient satisfaction, clinician satisfaction, financial margins, and enhanced reputation of providers (15). In addition, the Institute of Medicine in their report “Crossing the Quality Chasm” includes person-centered care in their six aims for health care improvement (see Table 55-1) (18). For an excellent overview for sleep apnea patients regarding patient-centered care, see Hilbert and Yaggi (19).

Another consideration for why adoption and adherence to CPAP is low is that patients may be skeptical of their diagnosis. In a recent article by Zarhin (20), it was found that many patients do not believe their diagnosis of OSA because of a lack of daytime symptoms or a lack of trust in the diagnostic procedure. This is an important consideration, which is probably often not thought about.

There are many ways by which the clinical sleep professional can provide support to patients. These
include such areas as SDM, patient care coordination, alignment of social resources, and care planning for self-management.