Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 4

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 the fourth in a series, following:

Part 1 – They said I need a machine, that’s it?
Part 2 – So I have sleep apnea? So what?
Part 3 – Are there options besides CPAP?

Fourth Challenge: Frustration rapidly leads to non-adherence

Overwhelming frustration with PAP therapy can be triggered by a wide array of issues, and along with this vexation follows a pack of other emotional responses. These emotions must be attended to by the patient with thorough coaching from medical providers, sleep technologists, sleep administrative staff, and DME staff, else the patient risks dropping out of therapy entirely.

On the topic of frustration, the authors emphasized three main points culled from the information received from PAP patients: 1) specific locations of resources and solutions needed to address common side-effects when using PAP; 2) acknowledgment of the embarrassment issues surrounding PAP; and, 3) awareness that successfully adapting to PAP is not an easy process. Also included was a comment from a patient who experience extreme frustration and gave up after using first PAP and then OAT without success.

Surprisingly or not, the vast majority of physicians may not receive any rigorous training in managing their patients’ emotional responses to vexing health complaints and diseases. Many doctors develop excellent listening skills over time and usually develop some empathetic or sympathetic responses to the plight of their patients. After all, the greatest number of patients does not arrive at the doctor’s office to report on how fantastic they are feeling. A physician is not only going to hear about all the health issues bothering the patient, but the doctor will also pick up directly or indirectly much of the emotional distress in the patient’s communication style.

How a doctor responds to this information may vary considerably, especially in the challenging world of 21st century, daily medical practice where primary care physicians are literally on the clock to complete appointments in under 10 minutes; and, I know of practices managed where the doctor will spend no more than 5 minutes with a patient. You can imagine such practice models require “cutting to the chase” within seconds of the start of the appointment, during which every minute is focused on defining and then solving a problem or at least outlining steps to define and solve a problem.

In sleep medicine, 5 to 10 minute encounters can actually work if the problem is a highly specific issue, such as needing a new prescription for a worn out chinstrap or mask cushion, a refill on leg jerk medication that works without side-effects, or confirming through an objective data download that leak is low, residual breathing events (AHI and flattening index) are low, and follow-up outcome measures of sleepiness, fatigue, and insomnia are at acceptable if not optimal levels.

Beyond such simple encounters, attempting to manage PAP patients more often requires appointments ranging from 15 to 45 minutes; and as before, patients doing very well do not typically schedule appointments unless forced to by insurance rules. Thus, patients with more pronounced complexities are the patients I will see most frequently at my center and would presume the circumstances are the same for other centers. In our facility, a common example would be an individual with a sub-optimal response to PAP and who also complaints of aggravating mental health symptoms including insomnia, persistent nocturia, unresolved leg jerk symptoms, and additional sporadic factors such as nightmares, pet interference, or environmental issues like mattress or temperature sensitivities. These encounters could require anywhere from one to three hours to deal with all aspects. In related cases, our PAP-NAP procedure was designed specifically for complexities involving burdensome mask and subtle pressure issues that just will not respond to simple interventions. Within the extended time allotted for a PAP-NAP, a great deal of time and effort is devoted to mask fit, mask leak, mouth breathing, dry mouth, headgear-induced side-effects as well as coaching patients through their natural inclination to over-control their breathing when feeling like pressurized air is awkwardly and uncomfortably taking control of things.

This latter scenario is worth delving into a bit to clarify the main point noted by the authors regarding patients feeling frustration both about the side-effects they experience with PAP and about how to find resources and solutions to solve these problems. In a paper accepted for publication, which describes our REPAP protocol (repeat, rescue, retitrations) to overcome CPAP failure, we commented on the dissatisfaction reported by many of the patients in their encounters with previous sleep centers. A common theme of the complaint was that issues were simply not addressed. Unfortunately, however, we could not determine the mitigating circumstances that led to these complaints. Were their providers uninformed on the topics, pressured for time, or inattentive? Might the patients themselves have presented with challenging communication styles or exhibited dependent personality styles demanding a need for “high maintenance” attention that doomed the interactions? 

What ever the reasons for CPAP failure, the larger question should always be whether or not the problems were in fact solvable. In a later section of the SAPCON article, the authors point out the critical importance of asking precise questions to the patient to find out what exactly is the difficulty. Recently, we received a call from an out of state patient 2000 miles away from us, who reported considerable frustration and wanted to visit our center for a full revaluation and relevant retitration studies. After a ten minute phone call with my clinical manager, it was clear mask cushions had never been replaced since the patient first started with PAP. Problem solved!

The other two points, regarding embarrassment and acknowledgement of the degree of difficulty it may take to adapt to PAP, both run up again an inherent flaw in our medical system, which developed due to the general structure of medical training and the intense administrative pressures in the delivery of health care services. The simplest way to describe this flaw is as follow: physicians are trained in such a way that they often work under the premise that a patient is a rational actor who will ingest all the relevant information, chew on it, digest most of the key points and then absorb the “data” into their brains to make good choices in moving forward. While this approach actually occurs in millions of encounters among millions of patients, there are numerous exceptions that crop up when emotional responses or the degree of effort leads patients to engage in less than stellar efforts to work through the issues or in the worst case scenarios, patients will engage in avoidance behavior if not outright self-sabotage. Despite this negativity, many of these patients can learn to use PAP therapy, but as you might imagine, their need for extensive coaching may require a level of time and effort that surpasses the threshold of various types of sleep doctors who will not or cannot go the extra mile for all sorts of reasons. Because we do not know the specifics on the patient who failed both PAP and OAT, we do not know if this patient simply never got all that was needed or whether he was unsuited to either therapy. 

The above is a very important consideration for all aspects of sleep medicine and none more so than DME companies, who are in the trenches every day dealing with the highly motivated individuals as well as a large spectrum of cases spanning dependent personality styles to avoidant behavior to self-sabotage. Now, consider the obvious gap in resources at a DME where a psychologist or a behavioral sleep medicine specialist is not likely to be directly available. The patient is then referred back to the sleep center for support, but here too there may not be a psychologist or behavioral specialist. These factors are some of the primary reasons PAP adherence tends to average about 50% across the board when comparing the best and worst sleep centers (and DMEs) and all the rest in the middle.

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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