Gaps in Sleep Medical Knowledge: Part X (A Call to Arms)

In the past nine articles I have detailed nine gaps in knowledge that are affecting the field of sleep medicine today. The field is in quasi-crisis mode with concerns about the apparent decline in the number of sleep medical centers and the dwindling number of sleep physicians in the USA. Attending to the knowledge gaps I have highlighted will help sleep medicine leaders build an assertive stance, motivate young doctors to specialize in sleep medicine, and encourage communities to embrace the invaluable role of their local sleep medical centers. Below is a summary of these points and actions.

 

We need an undisputed definition of normal sleep.

The lack of a definitive statement and measurement for normal sleep is arguably the worst omission in the field. The effort to define a minimum quantity of sleep without addressing the underlying issue of sleep quality is not only a distraction, but also will be used inappropriately by various non-sleep medical professionals to push their own agendas. Unintended consequences will emerge in at least two ways:

  • individuals sleeping less than 7 hours per night will be coaxed into using sleeping pills to sleep more hours, and
  • regulatory agencies will create more policies that steer patients away from necessary sleep evaluations, because they will be led to believe they just need more hours of sleep.

It is both astonishing and regrettable that the field of sleep medicine and its research community has not worked diligently to establish the meaning of normal sleep.

 

We need to scientifically distinguish sleep-disordered breathing from normal breathing.

As an industry and field of science we have had major difficulties discerning the differences between sleep-disordered breathing—the single most common health condition treated by sleep medicine physicians at sleep medical centers—and normal breathing. The controversies regarding how to measure and score sleep breathing events continue to plague the field in several ways. Lack of an absolute definition of normal breathing leads to:

  • confusion among both patients and doctors;
  • missed diagnoses in potentially hundreds of thousands of cases; and
  • inappropriate instructions to patients leading them to believe their sleep breathing condition is mild or non-existent.

These issues would be nullified if the field vigorously attacked the anti-patient policies and regulations of the insurance industry and government regulators whose efforts consistently attempt to set inappropriate criteria for defining sleep-breathing disorders. Moreover, the internal strife within the field itself must come to end and will only do so when a benchmark of normal breathing is established. Once properly defined, all other breathing patterns, no matter how subtle or how difficult to score, will be deemed abnormal. And, as is currently appreciated amongst a smaller cadre of practicing sleep specialists, when these patients treat their so-called subtle sleep breathing events, impressive health benefits are frequently gained in the vast majority of cases.

 

We need to acknowledge the existence of Upper Airway Resistance Syndrome (UARS).

It is time to resolve the ambiguity surrounding the UARS concept. I believe the American Academy of Sleep Medicine (AASM) made a mistake in trying to incorporate UARS into the nosology-defined umbrella of obstructive sleep apnea, thus forcing us to tell our UARS patients point blank “you have sleep apnea according to insurance criteria and AASM policies,” but by the way “you don’t have any apneas!” These nonsensical declarations must cease, and RERAs must be correctly accounted for and scored accurately on both diagnostic and titration studies. The current practice parameters lead the vast majority of sleep medical centers to be in recurrent conflicts with each other, because some practices understand and accurately use the UARS diagnosis while others completely ignore the condition. Reversing the AASM position is an essential step in consolidating the field of sleep medicine around unified definitions of what it means to suffer from sleep-disordered breathing.

 

We need to put more effective pressure on insurance carriers and government institutions.

Time and again, the policies and regulations set by insurance carriers and government institutions—beyond the hassles of excessive administrative burdens—ignore the actual science of sleep medicine. This chronic issue will no doubt continue as a perpetual problem, but there are plenty of current opportunities to engage with non-scientific entities on a routine basis, a strategy that should be guided by our industry body, AASM in collaboration with expertise of hundreds of sleep medicine physicians who must on a daily basis wade through the non-scientific insurance or government formulas to manage their patients.

The rejection of the UARS diagnosis and scientifically-determined rules for scoring flow limitation events is a prime example of insurer and government interference, which ultimately leads to a failure to understand and recognize the correct respiratory disturbance index. Such anti-patient practices interfere with and harm patients. The same goes for arbitrary sleep breathing metrics with idiosyncratic scoring rules designed purely to limit access to PAP devices, most notably in geriatric populations, where many patients with mixed UARS and mild OSA patterns are epidemic. The AASM and its advocates should be battling with these entities on a regular basis, including widespread public relations efforts to shine light on insurance carriers and government regulators that are harming our patients. In addition, as feasible, lawsuits or at minimum widespread collection of patient complaints against insurers and government policy-makers should be a standard component of the AASM’s community outreach as one means of playing hardball against agents who have demonstrated willful ignorance towards our sleep patients and their sleep physicians.

 

We need to resolve confusion around coding for clinical encounters and special procedures.

The failure of the industry to advance the use of innovative (and already established) billing codes has created something of a logistical clinical nightmare in which codes for patient encounters with sleep technologists are often misapplied. For example, CPT 94660 and CPT 95807 both fall under the aegis of Procedures and thus are acceptable with general supervision from the sleep physician. Using these codes encourages not only expedient management of patient, sleep tech, and physician time, but also provides small yet sufficient reimbursements to cover administrative and labor costs while improving patient compliance with PAP therapy. Just imagine: higher quality care at a lower price! The AASM, and the industry as a whole, need to support the correct use of these codes and to collaborate more actively with sleep centers in the trenches, many of whom consistently and correctly apply these procedures and related billing practices to the advantage of their patients. Regrettably, the AASM has fumbled on this particular issue in a number of ways, most notably at annual and other sponsored conferences when its representatives unwittingly appear to disseminate inaccurate guidelines on how to use these codes.

 

We need to improve insurance coverage for diverse approaches in applying PAP therapy.

Insurance-driven prior authorizations are predicated on the belief the majority of sleep apnea patients present with classic snoring or other breathing symptoms and daytime sleepiness. For these straightforward cases, sufficient care can be provided through home sleep testing and a doctor-prescribed auto-adjusting CPAP device.

In our clinical experience, the insurance perspective is insufficient because the typical, most common OSA/UARS patient suffers multiple co-morbid conditions that either directly interfere with sleep or create barriers to individual efforts to use PAP therapy. Moreover, auto-adjusting PAP devices (set to auto mode) do not meet AASM criteria for a valid and effective titration of pressure settings. Allowing insurance companies to dictate this model of care enables the steady degradation of sleep medicine.

A corollary to this set of problems is the failure of the industry as a whole and the field of sleep medicine in particular to recognize the tremendous value of in-lab retitration studies for complicated patients whose pressure settings and related PAP challenges (e.g. mask fit, mask leak, mouth breathing, nasal congestion, aerophagia) are in need of routine attention, often due to the problematic effects of co-occurring conditions such as obesity, heart disease, hypertension, and mental health disorders. The AASM currently has no practical policy to encourage the use of retitrations in a timely fashion because it does not appear to recognize that pressure settings in patients often change over time and does not appear to embrace the clear relationship between pressure setting accuracy and outcomes.

Worse, the AASM has not coordinated maximum pushback to the home testing phenomenon in our clinical practices, leaving us all to continually play catch-up and usually with a defensive attitude. While the AASM’s reputation largely remains good, it would be a stronger institution if it directly and more forcefully confronted insurance carriers and government regulators on these issues.

 

We need to emphasize the importance of outcomes over compliance.

A further challenge to advocacy for retitration studies stems from insurance carriers’ routine conflation of compliance and outcomes. Stating that someone achieving PAP compliance must be doing just fine is like saying a patient who is using their anti-diabetic medications regularly must be doing just fine, so we do not need to check any lab work.

Insurers have so much influence over sleep physicians and their practices, that many sleep staff (including specialists) are now wholly focused on compliance and fail to recognize the mediocre responses in compliant patients who only look good “by the hours.”

In developing our REPAP protocol (repeat, rescue, re-titrations) at Maimonides Sleep Arts & Sciences, we remain concerned by the large number of compliant patients who manifest residual sleep complaints such as insomnia, sleepiness, fatigue, and nonrestorative sleep. We hope to publish a paper soon on the REPAP protocol, an approach that clearly goes against the trend towards home sleep testing. Regardless, it is a physician’s responsibility to accurately measure the response to PAP beyond the simple tabulation of hours and dig into the overall sleep quality changes and related daytime improvements or lack thereof. As an industry and field of science we need to focus on the important role of outcomes over compliance numbers, and vigorously defend the purpose of retitrations in patients with poor outcomes to improve patient care.

 

We need to develop a niche focus on each of the comorbidities in sleep apnea patients.

The field of sleep medicine is finally realizing how much it has to offer many other fields of medicine. However, the leading experts in sleep medicine have not yet recognized the value in pushing the development of these niche markets.

While the field of cardiology now has its own specialty sleep practice organization, many other medical and psychological fields need to be penetrated by sleep medical experts and institutions. There are enormous opportunities in many different areas - such as Urology, Otolaryngology (ENT) and oral surgeons, Nephrology and hypertension clinics, Obstetrics, Neurology and Neurosurgery, Ophthalmologists and optometrists - with none as large and dramatic as sleep medicine’s impact on the field of mental health. These issues go beyond opportunities; all sleep medical specialists and researchers have an unequivocal responsibility to push hard to demand a seat at the table in the fields of psychology and psychiatry, because of the undeniable capacity for our specialty to positively influence the care of their patients.

In sum, consider just these three examples of important questions about comorbid sleep disorders that should be on the minds of all of us in the field of sleep medicine:

  • Do we really want to see nocturia patients continue to be exposed to unnecessary surgical procedures?
  • Do we want pre-exclampsia patients to spend prolonged times in the hospital?
  • Do we want the untreated sleep disorders of millions of mental health patients to go undiagnosed and untreated?

Again, as sleep experts, it is our duty to push this agenda to the limits, and doing so will not only enhance the care of many undiagnosed and suffering patients, but it will also serve to expand and stabilize the field of sleep medicine.

 

We need to change the reliance on AHI and RDI metrics.

Last but certainly not least, the field of sleep medicine needs to challenge the use of the arbitrary metrics known as the apnea-hypopnea index (AHI) and the respiratory disturbance index (RDI). In a nutshell, these two metrics are largely qualitative ways of establishing a diagnosis of OSA or UARS. Yet, they often do not reveal the true severity of a sleep-breathing problem in a manner that accurately informs the patient of the full breadth and depth of his or her disorder.

This issue was created when the field of sleep medicine was influenced down the pathway of insurance-based reimbursements. This initially made sense in order to gain coverage for our patients, but in the long-run by sticking with the insurance model, prices on all sleep medicine services and sleep durable medical equipment remain inflated beyond what the consumer should be paying.

As a result, incessant games of tug of war play out between insurers, government regulators and physician representatives, not to mention the squeeze on DME companies. The emerging objective at this point is a concerted effort to drive down all these costs, which is now having the secondary and highly problematic effect of forcing some sleep centers out of business and discouraging young doctors from considering the field of sleep medicine. For these reasons, the field desperately needs to work on a non-insurance or cash-basis model of care, which could lead to sleep medical centers managing a considerably larger volume of sleep disorder patients to balance the inevitable lower costs of care. And, it would permit the field of sleep medicine to establish its own scientifically determined metrics for sleep breathing disorders unconstrained by non-scientific entities. Think LASIK and the incredible growth and advances in technology in this field, and you’ll get the picture. The end result would salvage many sleep centers and yield new stability for the field. The AASM’s expansive efforts to forge a telemedicine program for our field is an outstanding first step, but much more is needed.

 

To conclude, it cannot go without saying how necessary it is for leaders in the field of sleep medicine, including AASM officials and leaders from other reputable sleep institutions, to seriously reevaluate how to move the field forward. The AASM is currently engaged in such endeavors, but to my knowledge very few of the concepts and themes described in this document are addressed by their efforts. Instead, they are attempting primarily to find more government-sponsored funding to assist in promoting the training of sleep medicine doctors as well as to establish a new model of care delivery (“hub and spoke”), which in my opinion places too much emphasis on academic sleep medical institutions. At the most recent annual meeting of sleep physicians and researchers in Denver, much discussion ensued on these points. It seemed, in my opinion, that the large audience at this 3-hour discussion was unable to form a clear-cut consensus. Many audience participants raised questions and objections to the proposals that were not responded to in clarifying fashion by the panel leading the discussion.

To be sure, AASM leadership offered several other ventures and proposals on how to solve the crisis in sleep medicine, and no doubt they will continue to work earnestly and diligently to develop and implement new plans and strategies. A major difference between my perspective and that of the AASM is that every single item addressed in these posts directly or indirectly solves a knowledge gap that currently compromises quality of care or returns control to the field of sleep medicine so specialists can provide a higher level of care. Given the long-standing complaints lodged at the field of sleep medicine for poor adherence rates among PAP users as well as the notable inconsistencies between different types of sleep physicians and sleep centers, I am increasingly persuaded a new focus on the quality of patient care in sleep medicine may serve both our short and long term interests better than some of the administrative approaches suggested. Along these lines, one final and pivotal example must be presented.

 

We need to rethink the default approach to treatment of sleep-disordered breathing.

The application of CPAP therapy as the default approach to the treatment of sleep-disordered breathing must be recognized for the harm it does to many patients unwilling or unable to use this somewhat outdated fixed pressure system. In no uncertain terms, a substantial number of patients are traumatized by their initial encounters with CPAP devices, even with auto-adjusting systems, because of their inability to tolerate breathing out against the fixed pressure delivered inward during expiration. The traumatic exposure experienced by these patients leads to a classic posttraumatic set of avoidance behaviors, where the individual drops out of care for months or years, because of their awful first encounter with a CPAP device. Technically, this problem borders on medical mispractice, because a sizeable proportion of these patients present risk factors of anxiety, nightmares, insomnia, and claustrophobia, as well as an array of psychiatric conditions and yet still are initiated on CPAP. Sleep medicine physicians, sleep technologists, and DMEs are all aware of the patients who cannot tolerate fixed CPAP, and fortunately many of these professionals are moving in the direction of expiratory pressure relief systems or preferably dual pressure devices (bilevel). Nonetheless, the number of patients who suffer traumatic exposure to CPAP is unknown but not a rare occurrence. And, sadly, this particular problem is one of the main factors continually soiling the reputation of the field of sleep medicine. This singular experience of acute, traumatizing CPAP failure leads to obvious disrespect for the field and its doctors and is regularly spread through word of mouth by numerous dissatisfied sleep apnea patients.

A large oversight by many in our field is to imagine that failure to initiate CPAP in such circumstances can be written off with phrases like “poor adapter” or “CPAP intolerant” without recognizing the long-term harm done to patients who have been pushed into these unpleasant experiences. It is imperative to realize this problem is not simply a matter of low adherence rates. Instead, these specific consequences are often interpreted to suggest the field of sleep medicine is knowingly indifferent to its patients because it does not raise objections that would attest to a serious concern about this adverse effect. If anyone doubts the relevance of the traumatizing influence of initial CPAP encounters, you only need to look at the way every other treatment option (e.g. OAT, Provent, ENT surgery, bariatric surgery) advertises their wares. Each talks about the hassles, hardships and horrors of CPAP, and they could not promote their alternative in this style if it were not true at some level. Indeed, even within the community of CPAP vendors you will find language like, “Don’t Let CPAP Destroy Your Sleep” when referencing a nasal pillow style. I strongly believe the frequency of these traumatizing experiences is much higher than most sleep professionals are willing to admit or are able to recognize. Identifying, naming and addressing this negative outcome would go a long way towards improving quality of care in sleep patients and upgrading the reputation of sleep medicine.

 

All in all, it remains uncertain whether the field of sleep medicine will survive as a full-fledged specialty area of medicine or whether it will be eventually co-opted by various disease-centered markets (e.g. cardiac care, mental health institutions, and pulmonary medicine). We need to unite and look at new pathways going forward to yield more prudent decision-making for the long-term health of clinical sleep medicine. It is my sincere hope the information conveyed in this extensive series will promote more innovative thinking and actions to improve the quality of sleep medical clinical care.

 

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Barry Krakow MD

Author

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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