Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 2

Last year, Sleep Review Magazine published an introductory story about the SAPCON project, which focuses on collecting input from patients with sleep apnea as a way to “democratize” research and gain valuable insights to promote more effective treatments. Sleep Review published a follow-up story to discuss the preliminary findings, which you can read about here on pages 26-28. 

This article is a continuation from Part 1 that covered the first challenge: They said I need a machine, that’s it?

Second Challenge: So I have sleep apnea? So what?

The summary provided by the authors outlines how patients may not be properly educated after diagnosis, focusing on three main gaps in understanding:

  • there is a relationship between sleep apnea and other co-occurring health problems,
  • treatment of sleep apnea may prevent or improve these comorbid problems, and
  • treatment may lead to overall health improvements.

Included quotes from patients confirmed they were not aware of the above, in addition to noting the lack of education on the “dangers of non-adherence.”

Two anecdotes showed how enhanced education leads to greater adherence. One patient reported his sleep doctor published a paper on the link between sleep and heart disease, which motivated the patient to use his PAP device whenever and wherever he would sleep. Another patient exclaimed she was never told why sleep apnea needed to be treated, and only when she learned about the connections to early dementia-like symptoms was she motivated to achieve compliance.

Many of the themes above are predicated on fear-based motivation, that is, the belief patients will move forward with treatment and maintain treatment compliance to prevent worse problems. The most motivation in such scenarios often revolves around heart conditions, because patients generally take heart disease more seriously than other illnesses, save the diagnosis of an acutely disabling condition or a terminal illness. 

Heart symptoms quickly grab a person’s attention, because you can feel things like chest pain, palpitations or shortness of breath and notice difficulties in trying to exert yourself when suffering various cardiac symptoms such as arrhythmias, heart attacks, congestive heart failure and ischemic chest pain (angina). While not everyone responds the same way, a sizeable proportion of cardiac patients pay close attention to their heart symptoms, seek care for them, and demonstrate some eagerness in wanting to move forward to improve the outlook of their condition. Thus, patients with recent heart attacks or heart failure often show interest in learning about and treating sleep apnea if presented in a balanced fashion. 

One caveat relates to the frequent use of supplemental oxygen during cardiac hospitalizations. Regardless of the type of mask (nasal prongs or face mask), a majority of cardiac patients report annoyance with needing to sleep with something on their face, which can evoke unpleasant memories when first confronting PAP therapy. Moreover, many heart patients suffer emotionally distressing experiences during acute cardiac illness (like believing or feeling like they might die), and these unpleasant experiences often arose during labored breathing or shortness of breath. Thus, a PAP mask, headgear, tubes and the machine may not immediately resonate with a cardiac patient, if they had developed a claustrophobic-like response in the hospital environment. A balanced approach may require starting with the unobtrusive nasal pillow masks (even if the patient mouth breathes) to avoid feelings of claustrophobia in a recently “traumatized” heart patient.

Fear-based motivation, however, does not always work in variety of circumstances where the pain and suffering seems improbable and in the distant future. If you informed an OSA/UARS patient “you will be a safer driver and suffer fewer car accidents,” the information is likely to not register in someone who already defines himself as a careful driver and whose had no driving mishaps in the past decade. A similar disconnect might arise in telling someone that treating sleep apnea might decrease the risk of hypertension, but perhaps the patient only currently knows of a family history of high blood pressure and her most recent readings were normal. Thus, specific clinical relevance to the patient is the more likely path for success. Even a minor condition that irritates a patient produces more motivation.

The most common experiences we see with risk-reward scenarios occur in patients who suffer both snoring and nocturia. Which one do you suppose leads to greater motivation to adhere to PAP therapy? The key distinction between these two symptoms is based on the state of consciousness when they occur: you snore while asleep; you get up to visit the bathroom while awake. Therefore, nocturia is the more vexing symptom to the patient; whereas, snoring is more annoying to the bed partner.

The impact of nocturia may go beyond annoying. Suppose you suffer from insomnia; then, nocturia will worsen the problem of unwanted bouts of sleeplessness. In this circumstance of comorbid conditions, the patient recognizes the direct and immediate opportunity to decrease insomnia—a very large reward in the eyes of any insomniac. While the individual may still be in the frame of mind to prevent something—insomnia—the typical insomniac is usually not afraid of insomnia, albeit such fears do arise in more severe cases. Then again, you could argue a patient is motivated by the fear of having a bad night of insomnia after a nocturia event, when confronted by a particular set of important next-day activities. All these aspects may serve to motivate an insomniac suffering from nocturia to adhere to PAP.

As another example, suppose you are elderly or physically disabled and are concerned about the risks of falling and injuring yourself in the middle of the night. Now, there is a real fear each night as navigating safely in the bedroom requires considerable attention. This fear seems more substantial in that falls at night in the elderly are a major cause of broken hips, prolonged recovery and rehabilitation, and directly or indirectly lead to death in the first year after the fall in a significant percentage of cases (ranging from 14 to 58% in different types of patients). 

By way of comparison, which set of symptoms, insomnia and nocturia or heart attacks and hypertension, do you suppose would prove more motivating for patients? The answer largely follows the degree of immediacy versus the degree of danger as described in the samples above. Someone highly annoyed by awakenings or trips to the bathroom at night will want to pursue immediate treatment steps; whereas, someone with a recent heart attack or hypertensive crisis may be highly motivated to pursue PAP to prevent deadly consequences.

In clinical practice, it is remarkable how these scenarios play out, especially with individuals who do not report many sleep complaints. In this common scenario, the patient might report very little in the way of medical co-morbidity, not even high blood pressure, but his physician referred him for sleep testing because antidepressants had not worked to improve his daytime energy level or fatigue. Unless the fatigue is fairly severe and the energy level noticeably low, the patient is much more likely to forego any further treatments for OSA/UARS, because he would describe the cure as worse than the disease. Moreover, denial is easy when there isn’t much to deny: if the level of fatigue or low energy does not seem to markedly affect the individual’s lifestyle, the person might respond by declaring he’ll drink one more cup of coffee in the afternoon as the best solution to his energy problem.

Patients with greater sensitivities toward their mental functioning are more likely to be interested in treatment, because they notice decrements in memory and concentration. Others who pay close attention to physical fitness may be motivated by the potential for a renewal of an exercise routine. But, if someone wrote off either of these conditions to aging or simply chose not to complain about cognitive dysfunction or about their lack of physical fitness, why would they pursue treatment for OSA/UARS?

Teasing apart symptoms that patients primarily complain about is usually the most direct pathway to engage them to ramp up PAP therapy use, and this approach often proves more expedient than relying strictly on the general, fear-based education model.

Barry Krakow MD


Dr Krakow’s 27 years of sleep research have focused on the complex relationship between physiological and psychological sleep disorders. Dr Krakow currently operates private sleep medical center, Maimonides Sleep Arts & Sciences, Ltd., and serves as Classic SleepCare’s paid Medical Director.

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