Access to Sleep Care: Part II

Following on the last point from the first post in this series is the journalistic “malpractice” that offers up numerous sleep tips, often in the wrong context or simply in abbreviated fashion that would steer sleep disorders’ patients in the wrong direction. As I have described many times before, the concept of “sleep hygiene” is an inherently important construct, but it is often overstated in value, misunderstood conceptually, and repeated robotically by lay media, such that the message rarely gets across in a coherent, practical and useful way.

My favorite example of this journalistic nonsense is the rote statements on going to bed every night at the same time…get this, as a treatment for insomnia! Do you really believe an insomniac wouldn’t love to go to bed every night at the exact same time as a simplistic and straightforward cure to the problem of unwanted sleeplessness? Of course they would, but it’s the going to bed and then going to sleep that is the core of the problem, which cannot be solved by demanding they lie down at the same time. To the contrary, such instructions will often lead to far greater frustrations, anger, and anxiety among moderate to severe insomniacs. And, among many individuals with mild insomnia, there is the possibility of making the insomniac worse by this degree of journalistic tunnel vision. 

This example highlights one of the main concerns noted in the AAHS report about the lack of reliable information about sleep disorders and their treatment, which despite our experiencing the Age of the Internet or in the Information Age, we still do not have highly accessible and accurate information for consumers to work with on their own. This problem is compounded by the lack of accessible and accurate information from their primary care providers, be it physicians, nurse practitioners, physician assistants, therapists, psychologists, psychiatrists, nurses, and any other health care professional dedicated to educating patients.

How can this lack of effective propagation of useful knowledge be rectified?

There are no easy answers here in part because of the same disrespect in the media as is shown by medical professionals and the public at large regarding sleep issues. That said, a major conundrum is the poor journalism we have been witnessed to in the 21^st century in so many areas of life, not just sleep medicine. Ironic isn’t that in an age where you can find so much information with just one or two clicks of the mouse, and yet so much of it doesn’t provide a depth of coverage to help you find meaningful solutions to your health problems.

As the best example in sleep medicine, almost nothing is written about on a regular basis on why CPAP is such a problematic device for those who cannot get comfortable breathing our against the fixed pressurized airflow. And, the way the topic is currently written about, one could imagine the problem is rare. Yet, when any sleep doctor spends just 5 minutes explaining to a failing CPAP patient the difference between CPAP and BPAP (bilevel), the majority of patients will immediately respond, “sign me up!” But, the majority of sleep doctors do not provide such information, and even if they did traverse this pathway with their patients, they might still balk at the changeover because of concerns about dealing with insurers who would try to block prescriptions for these more advanced and comfortable devices.

Talk about journalistic lip service if not outright confusion or mistakes. And, even among people who consider themselves experts in sleep medicine we can see similar problems.

In this post the writer is the marketing agent for a sleep center and barely mentions the problem of expiratory pressure intolerance and then proceeds to compare BPAP to CFlex and makes a factually incorrect statement to suggest that CFlex operates like a mini-bilevel device. CFlex actually drops off the airflow; it doesn’t decrease the pressure like bilevel.

This next post comes from the professionals of the AAST (American Association of Sleep Technologists), and their discussion of the mechanics of bilevel and how it resolves EPI is detailed and well-written, but they still get two things wrong about BPAP therapy. First, they think CPAP is best for mild sleep apnea, but this statement is wrong because mild sleep apnea patients tend to be much more sensitive to pressurized air. Therefore, most mild cases actually need BPAP so that they are not made uncomfortable breathing out against fixed pressure. The second error is that there is a hint that BPAP is really for more problematic cases like patients with lung or heart disease or patients needing higher pressures.  In actuality, BPAP could be used by everyone, and most people would prefer it to CPAP if given the chance to try it out.

The next one is from something called Tuck Sleep (a company that also sells mattresses and more), and despite their post only being a few months old, they clearly do not understand the value of BPAP in a much larger proportion of cases. Here’s their quote, “Bilevel positive airway pressure (BIPAP) is prescribed for people with central sleep apnea, chronic obstructive pulmonary disorder (COPD), congestive heart failure (CHF), as well as other chronic lung or neuromuscular disorders.” This information looks like a quote extracted from a sleep medicine resource from maybe 10 to 30 years ago. 

This next post is of interest, because it actually reports on specific benefits to BPAP that none of the other posts identified. The post reveals that bilevel might decrease problems with aerophagia and claustrophobia. Bravo! However, it then goes on to make the mistake of declaring that bilevel is best for treating central sleep apnea. What they meant to say is that an older version of bilevel called Bilevel ST can be used to treat central apneas, and it has some similarities to ASV because it triggers breaths to overcome the central sleep apnea problem. Like many other posts, it finishes with the fallacious and standard policy telling the reader not to worry because everything can be sorted out by their own sleep doctor. Sadly, this point is invalid because the vast majority of sleep docs refuses to experiment with BPAP and refuses to let their patients try it at home or in the lab.

There are actually hundreds of posts that demonstrate these types of flaws, but we just started by only looking at groups working in the field of sleep. In the non-sleep areas of journalism, for example popular blogs and magazines, the inaccuracies, omissions, and misleading commentaries are sufficient to steer a large proportion of cases in the wrong directions. Specifically, if we just imagine the impact on who does and who doesn’t get to try BPAP, the short answer is that these flawed posts or articles drive thousands of patients away from any and everything whose name is not CPAP.   

Unfortunately, this deficit in journalism is par for the course and directly impacts why so many attempts to improve access to care fail. Here are two reasons that explain this failure. First, given the style of writing observed with such disregard for innovation, most patients would be left believing that CPAP is their only option so why bother asking for more. Second, the deficit defined by the lowest common denominator puts everybody with skin in the game fixated on the same page: CPAP, CPAP, and more CPAP! As a result, from every vantage point anyone who attempts to rock the boat will be criticized if not condemned for suggesting new options for patients. As this warped consensus remains entrenched, it will take years for new opportunities, ideas, and enterprises to break out of this vicious circle.

Which leads us to the AAHS’s next section on research opportunities. They want to see research on sleep disorders’ treatment, insurance coverage and decreasing patient costs. There are tons of opportunities for doing so, but the question always boils down to who holds the keys to unlock funding resources and who gets the money to conduct the research? Think for a moment on this aspect as it relates to so little studies conducted on the use of bilevel. Moreover, so many of the bilevel studies turn up with no interesting findings, and therefore invariably reach the same conclusion that BPAP is no better than CPAP.

But here’s a little research secret to explain these odd findings. Do you know what kinds of patients get studied when investigating differences between CPAP and BPAP? If you guessed the obvious and said “patients who are not doing well with CPAP,” you would be dead wrong. Instead of the most apparent need for investigation, many studies are conducted with a bunch of CPAP users to find out whether or not they think BPAP is better. But, why would patients doing well be the ones to study? If they are already doing well with CPAP, how much more improvement will they gain with BPAP? And, how easily will these patients be able to detect such differences since they’ve already made substantial gains in outcomes, like sleepiness or insomnia.

The most obvious research would be among patients failing CPAP, like the types of studies we’ve repeatedly conducted and published since 2013. Our studies are always working with patients who are failing CPAP, because CPAP failure cases as well as CPAP users who are not adherent outnumber the successful users of CPAP who are adherent and getting very good to excellent responses. In other words, the largest sample of OSA patients in the world would be those who reject CPAP or who are currently struggling with CPAP. This comparison is the essential task at hand, and yet such studies are rarely conducted, because whoever holds the purse strings has not shown any interest in seeing these investigations conducted, let alone published. These granting sources are most commonly from the federal government and related institutions and their funding invariably goes to universities and related institutions that preach the “party line” that CPAP is the answer to all OSA cases. 

Finding the resources to test failing CPAP cases on newer, innovative technologies such as BPAP, ABPAP or ASV is a crucial path forward, because when these studies are properly conducted (as a few have been in the past by several different research groups), there would at least be a chance to see a change in prescribing behavior among a larger proportion of sleep medicine specialists. Regarding the other two areas, including insurance coverage and holding down treatment costs, again you might imagine that insurance companies would show more interest in these areas, but it is not my impression that they are interested in anything but the status quo, so we don’t see them funding such research.

Which brings up the last point on other areas to research, to which I suggest there is a large need for other types of outcomes research to develop new ways to look at the problem of CPAP failure.

In my opinion, the greatest deficits in sleep medicine research are the persistent lack of definition for all the components that would identify a gold standard response to PAP therapy. Instead, we are told that CPAP is the gold standard treatment, yet CPAP therapy often never rises above bronze or copper level of therapeutic efficacy. Moreover, work in this area is crowded out by the disturbingly arbitrary and now entrenched use of the “adherence” metric to measure use instead of teasing apart all the relevant outcomes among patients to determine what a gold standard response would look like.

Here are a series of questions that will move this conversation forward.

1. If so many patients with sleep apnea do not report classic sleepiness but instead complain about daytime fatigue or episodes of tiredness, what research can track this information to show why reliance on sleepiness has mislabeled many OSA patients and deprived them of any opportunity of receiving an optimal response to PAP? Many docs write off their fatigue and sleepiness.
2. If nocturia were mostly eliminated in patients receiving great responses to CPAP, BPAP, ABPAP or any other PAP, how would the field of sleep medicine change when patients learn that their endpoint should be the elimination of all nocturia episodes?
3. And related to nocturia, what would happen to sleep physician prescribing practices if a comparative face-off examined the changes in nocturia on CPAP users compared to advanced PAP? If the advanced group show greater decreases in nocturia, would sleep doctors still tell their patients, as they currently do, that one to two trips to the bathroom at night is normal?
4. What about a clearer examination of how mask leak, mouth breathing, dropping the angle of the jaw and the purported treatments for these problems directly affects outcomes? What if a study showed that even a small leak or just a little mouth breathing actually prevented someone from attaining a gold standard response to PAP?

This list could be exhaustive (pun intended) because there are so many areas of precision sleep medicine that could be investigated but currently are not studied due to many of the reasons cited above. The more research of this type, the faster we will see the development of much more effective treatments as well as cures for the various obstacles that may arise in OSA/UARS patients struggling with PAP. Hopefully, an organization like the AAHS will see its way forward to look at the pathways described in this two-part post.