Sleep medicine has always been at a severe disadvantage in the assessment part of diagnosing sleep disorders, because the conditions are not readily apparent to many individuals suffering from these conditions. When you suffer a sore throat, you often would have already spent years or decades of your life experiencing the absence of any symptoms in your throat. When it becomes sore, you immediately know something is wrong. By recalling past experiences and perhaps with the assistance of friends and family, you could determine the problem is nothing to worry about. It could be allergies or a virus. You would not usually jump to the conclusion you are suffering from throat cancer. Instead, you watch and wait, but if a fever develops or the pain worsens, you visit a doctor. From there, you receive a treatment plan and often recover in a few days, sometimes a little longer. When you are cured, the throat returns to normal, and you no longer notice anything at all about the recent problem.
A sleep disorder is much more nuanced, because you could easily lead yourself to believe your past sleep experiences were perfectly normal, for example, if you sleep all through the night, what evidence would lead you to believe otherwise? Thus, when you suffer from daytime fatigue or sleepiness a few hours after you awakened, you do not experience an immediate thought informing you something must be wrong with your sleep. Instead, the single most common behavior would be to simply normalize the feelings or treat the feelings with another cup of java. Either way, your imagination is not running wild worrying about something else being wrong; you are not speculating on whether you suffer from sleep apnea or leg jerks. There is no deeper or penetrating analysis, because you believe nothing is wrong and you are behaving normally irrespective of any and everything else you think about your sleep.
Another example, similar to and ironic regarding the sleep scenario would be hypertension. We used to think patients might experience a number of symptoms such as headaches, dizziness, or fatigue when blood pressure settings were above normal levels. Now, it’s very clear the typical hypertensive has no overt symptoms to trigger concern. Instead, the BP levels are checked at various health-focused establishments such as clinics, doctors’ office, or shopping mall do-it-yourself facilities. And, after repeated checking, a diagnosis of hypertension or borderline hypertension is noted. Infrequently would the individual be reporting a host of other symptoms during the development of this cardiovascular disease. And, therefore at the point in time when the patient hears about the confirmation of the diagnosis of elevated BP, he or she is not craving anti-hypertensive meds. What follows instead is a lengthy discussion, often about other health related factors, most notably diet, weight, exercise and excess use of coffee or alcohol. Notice all these strategies revolve around adjustments in behavior where the patient could intervene on his or her own behalf to rectify the problem, after which a series of unsuccessful efforts would lead to the medication(s).
Again, notice it was an intellectual discussion with the healthcare provider that eventually must turn the patient’s perspective toward the notion something is wrong. The irony of course is that had the doctor included sleep and sleep apnea in the original discussion regarding the findings of early or borderline hypertension, we would see in many healthcare clinics a lot fewer individuals on medications because PAP treatment often resolves this problem especially if implemented as one of the original treatment options.
Sleep disorders, in contrast to hypertension, have the luxury that at least some symptoms may be visible, yet due to the great disrespect regarding sleep symptoms in general and so much disregard for the specific symptoms of daytime fatigue or sleepiness, the process of diagnosing a sleep disorder is almost invariably a “back burner” item or afterthought in the minds of both patients and providers. Imagine how different the field of sleep medicine would look, if everyone woke up in the morning and conducted a thorough step-by-step analysis of the quality of their sleep coupled with an hour-by-hour analysis of their development of fatigue or sleepiness symptoms during the remainder of the day or at least the first six hours of the day.
This sort of consciousness about the direct and immediate effects of sleep would radically change our society’s understanding of the importance of sleep and would directly implicate sleep problems as the leading cause of daytime fatigue or sleepiness, which of course they are. What actually happens when daytime fatigue and sleepiness appear to warrant attention is for the patient or the provider or both to begin any discussion by raising questions about the need for blood tests or as with hypertension, a discussion on diet, weight, exercise and excess use of coffee or alcohol. None of these things are inappropriate, but they are certainly a large distraction from what’s going on at center stage. They often prove to be a large waste of time that may extend for weeks, months, or years and sometimes not uncommonly decades.
Imagine the doctor declaring to the patient at first notice, “you suffer daytime fatigue or sleepiness, so there’s probably something wrong with your sleep. We better test your sleep.” Instead, the first pronouncement is much more likely to be: “we better test for diabetes, thyroid conditions, or anemia…and by the way, are you feeling depressed?” Again none of these steps are necessarily inappropriate, but if the diagnosis were to be blatantly obvious to the healthcare professional as it would be to a sleep professional, then the intellectual discussion to connect the Zzzzots would occur far earlier in the course of the disease process.
The lack of this sleep-centric focus is arguably the major issue that gets sleep apnea patients off on the wrong footing as they go through the months, years and seriously decades waiting for someone to point out the most likely explanation of their daytime symptoms of bad and broken sleep. Once these patients finally arrive at the correct diagnosis, there is already a built in disrespect for the condition, as in, “well, how could all this sleep stuff be important if it took my doctors months, years or decades to sort out?” By the way, in my clinical practice, I am stunned by the number of people who give their providers a pass and declare aloud, “I wonder if I’ve really had this problem much longer, maybe even my whole life.” Such a reckoning is valuable for the patient to understand the nature and intensity of the problem of sleep apnea, but I am surprised how rarely anyone expresses frustration or anger about his or her provider having dropped the ball when it came to considering sleep apnea. Can you imagine patients expressing themselves the same passive way if the doctor had missed a cardiac condition or cancer or diabetes? Think of all the damaging symptoms that would have festered for lack of the correct diagnosis for any of these conditions. You don’t think patients would be upset about the diagnosis having been missed?
Yet, when sleep apnea goes undiagnosed, it currently is one of or the leading causes of car accidents or workplace accidents. You would think someone might be just a little disturbed about all the hospital bills, loss of work, and resulting disability from accidents that might have been prevented had sleep apnea been diagnosed and treated at some point earlier in the timeline. Sadly, not only is this complaint not registered with any regularity in the circumstances of accidents, but also more broadly, sleep health is so far under the radar, it negatively affects how people move forward when they are finally diagnosed.
With all the above discussion, I trust it is clearer why it is so important for patients and providers to vigorously work together to define and gain awareness of the experience we are calling “sleeping better,” which we introduce in Part II of this series. The absence of efforts to focus on “sleeping better” is currently one of the largest barriers to care among those sleep apnea patients engaged in various steps toward diagnosis and therapy, but have yet to reach either regular use of PAP or who have yet to experience clear-cut improvements. Until these patients can learn to measure the “sleeping better” construct themselves and until they actually appreciate the experience, their motivation just cannot last for more than a few weeks or a few months. The same holds for their providers. If they are not incessantly attempting to clarify whether the patient is sleeping better and of course if the providers are not working to help them sleep better, the dropout rate remains very high.
As you would imagine, if none of these points were worth talking about, it would mean the opposite experience would currently be unfolding before our eyes. Patients would be beating down the doors of sleep centers and sleep laboratories demanding to sleep better. And, once they started treatment and noticed they were not sleeping better, they would again be beating down the doors of the center or lab to gain relief. It would be no different than those who feel their sore throats worsening, but alas, the process is nothing like this simple pain symptom for all the reasons we’ve delved into above.
If you put everything together in this series, it all boils down to just one thing: the insurance companies need to gain a clearer vision on how large the “sleeping better” factor influences who does and who doesn’t use PAP. If they in fact heeded this simple mission statement, by using something catchy like, Make America Sleep Great Again, then they would develop a more flexible attitude about looking at the specific factors that improve sleep quality from the get-go, which in turn would lead to greater use of PAP therapy, a goal by the way that is unequivocally shared by every single player in the game of OSA: patients, doctors, insurers, DME companies and anyone else directly or indirectly involved in the patients’ health and healthy lifestyles. It is literally a win-win-win-win-win-win ad infinitum as far as the eye can see.
Now we want to look back at the various factors that we know can turn this ship around to show why the insurance companies are better off following our model of care instead of their “use it or lose it” model.
An administrative bullet point to go along with Make America Sleep Great Again would be: “outcomes, first, last, and always!” If someone is sleeping better, then some outcome will have changed in 99.9% of cases.
Let’s start with my favorite symptom, nocturia, the one we covered a great deal in Part I where we discussed how various data points and statistical analyses could lead an insurer to sort out the cost-effectiveness of keeping people on PAP so their trips to the bathroom would decrease. Now, we’ll discuss the same symptom, nocturia, as it relates to the insurer’s dictates to arbitrarily call a certain degree of use compliant and another lesser degree of use noncompliant.
In this example, let’s look at the research showing that so-called noncompliant use of PAP therapy can still be associated with a decrease in trips to the bathroom. Someone using PAP 3.5 hours/night for 5 nights per week would not meet insurance criteria for compliance yet could easily be experiencing tangible decreases in nocturia. We actually published on this concept in a paper that compared the results of compliant vs non-compliant patients, both groups of which were regular PAP users. But, the noncompliant group average only about 20 hours of PAP per week compared to the 40+ hours in the compliant group. Still, both groups enjoyed some decreases in nocturia episodes, not surprisingly the compliant group seeing better results than the noncompliant group. And, overall, there was a statistically significant association between increasing hours of PAP use and decreasing nocturia episodes.
Visually, in our research paper we showed these changes in what are called histograms or bar graphs. And, you can see in the first set of graphs where the compliant patients have the largest drop off, then the subthreshold compliant the next most relevant drops off and finally no drop offs for minimal users.
Stop and imagine for a moment the considerable joy and satisfaction experienced by sleep disorders patients who are plagued by multiple visits to the bathroom during the night. Among insomniacs, the trip to the bathroom may be long enough to trigger a new round of alertness lasting one to two hours. Among the elderly, the pit stop leads to increasing risks for falls, as nocturia is one of the leading, sometimes the leading cause of falls in the elderly (described in more detail in Part I). Among individuals with poor sleep quality coupled with daytime fatigue and sleepiness, trips to the bathroom are another reminder of how miserable the next day will be due to the low energy caused by fragmented sleep.
In all these cases and so many more, OSA/UARS patients are almost in tears after they visit the sleep lab and use PAP for the very first time and yet don’t wake up to pee or wake up far fewer times. They are ecstatic to know PAP can make this much difference in the capacity to sleep all through the night. When they go home and start using PAP, one of the greatest motivators proves to be decreased nocturia episodes, and as a good fortune would have it most users of PAP experience the decrease in trips to the bathroom even before they experience the decrease in daytime fatigue and sleepiness. Nonetheless, their newfound ability to sleep all through the night is an astonishing experience, one that in the earliest adaptation phases of PAP proves to be something they very much look forward to.
This outcome is one of the first things we talk about with our patients as they get involved with our sleep center, and it’s one of the things we repeatedly talk about in the early going to keep reminding a patient how quickly benefits might arise with PAP. Now, let’s do the math on compliance vs. noncompliance. Someone uses PAP for 20 to 25 hours per week and stops using the bathroom at night. Can an insurance company make a serious argument of any type as to why they would no longer cover this patient’s device? The answer is an emphatic no. So, why the devil is the insurance company looking at the number of hours used instead of the change in nocturia?
When you discover the answer to these questions, please let us all know.
For every type of outcome you can imagine for those suffering from OSA/UARS, there are similar scenarios, some requiring more PAP use while others more readily evident like nocturia with only partial use. The outcomes are telling us the story about the patient’s progress with PAP, not the arbitrary metric called “hours of use” or the worse than arbitrary metric called “compliance.” And, nearly every one of these outcomes on some level improves in relationship to “sleeping better.”
To be clear, I am not suggesting “sleeping better” is always a perfectly reliable experience for patients to gauge their changes. Just last week, as is quite common, I saw yet another patient who could not stop harping on the changes in his apnea-hypopnea index, and when asked the question, “are you sleeping better,” his response was “according to the numbers, yes.” We always need to walk back the patient several steps to realize the futility of using the numbers unless we are trying to gauge the patient’s objective response to PAP. Whether or not one is sleeping better requires the patient to pay attention to all the outcomes we are referring to in this discussion: headaches in the morning, daytime fatigue, excessive sleepiness, awakenings at night, unrefreshing sleep, poor sleep quality, poorly controlled hypertension, persistent cardiac arrhythmias, mood disturbances and other psychiatric distress. The list goes on and on because sleep has so much impact on virtually all aspects of your mental and physical health.
And, despite the broad swatch of outcomes that will reveal the patient’s progress, there are only a small number of factors that must be dealt with to teach the patient to use PAP effectively, which in turn leads to “better sleep.” A reminder from Part I, these include: persistent mask fit difficulties, intractable mask leak issues, unresolved leg jerk issues, and a poor response to PAP therapy due to either the wrong type of device or the wrong pressure settings. There are variations on all these aspects of PAP therapy, such as chronic mouthing breathing and dry mouth, but both these problems are usually related to mask issues or the use of a chinstrap or mouth taping.
In the next post, we will (finally) go into the depth needed to resolve these barriers and why the sleep lab is so important in this process. Previously we mentioned how much the lab environment can play a pivotal role in resolving most barriers. As described earlier, from a pragmatic point of view, a patient could make repeated trips to the DME provider or to the daytime sleep center staff to be fitted and to receive a new mask to attempt to resolve all mask issues. For the problem of leg jerks, the patient could be tried sequentially on multiple different medications or supplements or both over a period of weeks and months until the patient reports enhanced sleep consolidation and a resultant improved response to PAP. Last, regarding the PAP device itself, the patient could be sequentially switched from CPAP to APAP, and then to BPAP, and then perhaps even ABPAP, all using default settings or through minor tweaks post data downloads. After a trial with each new device, the patient would return to discuss progress, at which point the provider, physician or sleep technologist adjusts the pressure settings again, based on the information acquired in the data download.
But, in actuality, the lab works better to solve all these problems and solve them faster, yet so many sleep professionals do not understand these nuances. In Part IV, the next post will provide all the details.