Sourced from Classic Sleep Care- So Long to Solo Practice Medicine
In a very recent issue of JAMA, I was reading about the general problem of the decline in small medical practices, “Can Small Physician Practices Survive? Sharing Services as a Path to Viability.”(1) Although the scope of this article is more concerned about the use of new resource models that would help small practices stay afloat, the beginning sections of the commentary speak about the very important topic of quality of care. After describing briefly a few of the examples the authors provide, I will illustrate how these ideas directly affect small vs larger sleep medicine practices.
The first data point is the decline in solo practitioners from 1983 to 2014, a drop from 44% to 19%. In contrast, in 2015 34% of all doctors were in practices involving 100 or more physicians. These changes are dramatic to say the least, and the trends certainly do not bode well for solo docs. I worked in an academic medical setting from 1979 to 2000, and then I switched to solo practice 18 years ago. All around me, I see a dwindling supply of solo practitioners in various fields of medicine. In New Mexico, I am not certain of the actual count, but I believe there may only be a handful or fewer solo sleep medicine specialists. The largest proportion of sleep patients are served by large hospital centers, academic, or community-based facilities. All these sites have three or more sleep doctors, and most have several mid-level professionals in the form of physician assistants and nurse practitioners. By definition, some of these practices are still considered small, but then again they are still influenced by larger administrative bureaucracies that impact quality and delivery of care.
The second and main data points address quality of care in ways that may or may not be surprising. In one study, a comparison looked at practices of only 1 to 2 docs versus practices with 10 to 19 docs and found that the smaller groups demonstrated a 33% lower rate of preventable hospital admissions. Small practices of only 3 to 9 docs showed a 27% lower rate of preventable hospital admissions compared to larger practice groups. Presumably, “preventable” simply meant various factors in the examined caseloads that could have been identified and managed to prevent the hospitalizations, and the smaller practices were far better at this form of management. Another study looked at a very wide spectrum of practices measured from 5 to 750 doctors. Not only were the smaller practices better again with lower rates of hospitalizations but also better in keeping costs lower in managing diabetic patients.
Can you guess why?
The commentary does not address this issue other than to indirectly suggest that the “personal touch” had something to do with these better and cheaper outcomes. There are probably a lot of different reasons, but one that jumps immediately to mind might be as simple as the type of person who stays in solo private practice in this day and age of aggregate data, if not aggregate doctors. One of the big ideas about BIG DATA is the belief that with so much information, the probability is increased of finding out so many more things about entire populations that eventually the insights filter down into specific patient situations. However, the conclusions drawn from aggregated data may sometimes end up serving a purpose that places financial or expedient aspects over quality of care.
Consider the inception of home sleep testing. As HST cannot provide the same amount of information as a polysomnogram, why would insurers promote this model of care? The answer is not just a straightforward cost-analysis. Rather, entrepreneurs who invented HST devices looked at the big picture and realized that an enormous number of patients could be diagnosed with sleep apnea without ever having to know what was transpiring in their sleep patterns. Yes, there is tremendous irony in the fact that a homesleep test usually is not measuring sleep at all. Instead, it measures a sufficient amount of information regarding breathing and oxygenation to reliably detect the presence of a sleep breathing disorder. And, even though my colleagues and I want to see more sleep specific information (EEG brain waves) to actually measure the important variables of sleep stages and sleep fragmentation, we cannot deny the HST model provides a clear-cut tool for diagnosis OSA in specific cases. Some of these devices purport to test for UARS as well.
Thus, this BIG DATA idea that you can detect and measure the severity of the diagnosis of OSA without knowing what’s going on with the patient’s sleep has had a major impact on the field of sleep medicine. Nowadays, HST provokes a lot of controversy not to mention a great deal of struggle between sleep centers and insurers, whenever the necessity for more in-depth sleep information is in play. No doubt, technology will solve this problem as well, probably sooner than later, as HST devices become more sophisticated, but that’s another story.
Think of the potential impact of HST on solo practitioners. On the one hand, this model of care has actually driven some private practice doctors into retirement (and closed some academic centers as well), because these sleep professionals were situated in an environment where their particular insurance companies rapidly instituted policies promoting and then demanding HST’s. If a solo practitioner or any other sleep doc for that matter had to rely on some proportion of cases tested in the sleep lab, then as soon as the number drops below that percentage, the practice may no longer have been financially viable.
When I was growing up in the 1950s and 1960s, a common expression of the day was, “You can’t fight city hall.” It’s just as relevant today as government in many places continues to expand and create more and more rules and regulations about everything in our lives. The same paradigm seems to have taken hold of the insurance companies who often dictate what actually occurs in sleep medicine practices in many parts of the USA. Again, how long could a solo practice physician fight with insurers to maintain their necessary financial status as well as maintain a level of quality of care perceived as necessary and appropriate? Take the specific example of the prior or pre-authorization process, which wastes enormous amounts of time, energy, resources and money in attempting to schedule patients in a sleep center. The expanding prior authorization paradigm is already curtailing practices patterns in numerous ways, including increases costs while decreasing revenue.
Return to the specific effects on solo practice, keep in mind that many solo practice physicians are probably one of two overlapping types. They might be more curious and creative about looking at new or advanced ways to provide care to their patients, and they might be less comfortable with other doctors let alone administrators breathing down their necks telling them how to manage patient care. I suspect both perspectives are common in physicians who end up in solo practice. I do recall both factors influencing my decision to go into private practice by myself following several waxing and waning struggles with the bureaucracy of university environments. And, because I had the good fortune to learn so much about research in the university environment, I found I could eventually bring that mindset into my private clinical practice of sleep medicine to enrich my work experience and more importantly create new ways of evaluating and treating my patients. What I learned greatly expanded how I treated several of the most common sleep disorders, primarily OSA/UARS, insomnia and nightmares.
Indeed, one of the greatest joys in my medical career has been to involve myself in researching both the patients who seek care at our center in New Mexico, along with the occasional research cohorts we recruited for smaller projects. This combination of activity, which generally falls into the retrospective (that is, simple chart reviews) and prospective (that is, a formal project where we seek Institutional Review Board approval) designs and has enabled us to learn so many things to apply in helping our patients sleep better. For instance, we had the opportunity to work with so many mental health patients with sleep disorders, we were inundated with the problem of CPAP failure, which in turn pressured us into looking for another solution. Once we latched onto the bilevel devices, we immediately found ourselves developing a new paradigm to monitor and resolve the problem of expiratory pressure intolerance. Simultaneous to these experiences, we realized contrary to the conventional wisdom that many insomniacs could in fact use PAP therapy, just not CPAP. Instead, by switching them to bilevel devices not only could they adapt and adhere to pressurized air flow, it actually decreased their insomnia more so than standard CPAP or APAP devices.
These two pieces of information radically changed the way in which we practiced sleep medicine, and then a third concept arose between 2008 and 2010 when we starting using even more advanced bilevel devices like ABPAP and ASV. We realized we could manually titrate these modes in the sleep lab to provide an even better response than simply using their auto-adjusting capabilities without the added human factor of a sleep technologist over-riding the device.
We were also fortunate to have the good sense to hire individuals with more creative bents to work in our front offices and in our sleep lab. And, all told there were four individuals who worked as sleep technologists and who at various points put in major efforts in sleep research at our non-profit Sleep & Human Health Institute. In total, their efforts comprised somewhere around 30 years of combined work. Several other sleep technologists put in part-time efforts totaling another 10 years of research experience.
All these process unfolded in the context of having some degree of free rein a private practice system and which further enabled us to open up and fund our non-profit institute. This creative component in myself and in the personalities of more than half of my staff greatly influenced our desire and motivation to remain in solo practice.
Other solo practitioners may operate with different aspects of creativity. For example, I have noticed many primary care physicians develop niche practices where they can provide competitive services in managing complex disease processes like diabetes such that their patients rarely if ever need consultations with endocrinologists. The same has proven clearly to be the case with many primary care physicians practicing elements of psychiatry in the management of psychotropic medications. None of these efforts guarantee that all these solo practices are the best they could possibly be. Likewise, I cannot say that I would not have benefited by engaging with other sleep doctors had they been more closely available to my practice setting. Though I meet with many sleep physicians in numerous venues throughout any given year, such encounters are far different than working in the trenches with another physician. For these reasons, some doctors forego solo practice, but are quite happy in groups of 2 to 3 physicians.
It appears solo practices are a dying breed. My sense is this trend will be a bad thing, because it will likely lead to more groupthink as naturally occurs in larger institutional settings, such as seen in hospital practices. But, however things evolve, healthcare in general and sleep medicine in particular are certainly in for a great many fluctuations in how to deliver healthcare.
(1) Khullar D, Burke GC, Casalino LP. Can Small Physician Practices Survive? Sharing Services as a Path to Viability. JAMA. 2018 Apr 3;319(13):1321-1322. doi: 10.1001/jama.2017.21704.
Sourced from Classic Sleep Care- The Southern Sleep Society 2018 (Part II) – Dr. Krakow’s lectures on PTSD and CPAP compliance gain attention among top sleep professionals.
During my last blog post on the Classic SleepCast for Classic SleepCare, I discussed how I was invited to deliver two talks on sleep at the Southern Sleep Society’s 40th annual meeting. I will also be doing the same lectures during the September Sleep 2018 meeting as well. My talks delved into the “PTSD Sleep Clinic and Nightmare Triad Syndrome” and “Advanced PAP Therapy to Increase Compliance and Decrease Insomnia.” Both talks were received very well and sparked a number of discussions afterwards with several of my colleagues and other attendees. Several key points were offered in my talks, and my last post used a bullet point summary to make you aware of the most relevant.
In that post, I also discussed how an atypical presentation of OSA/UARS in an insomniac often leads to the use of advanced PAP devices at our sleep center in New Mexico. Now, I want to delve into this same issue but we will be looking at the point of view where someone is prevented from obtaining an advanced PAP mode. And, this barrier to the use of advanced PAP almost always relates to the current confusion about the core concept of CPAP failure, something we have discussed in this blog previously.
A recurring theme from attendees who approached me after each of the talks were the difficulties, hassles, and obstinacy encountered when dealing with insurers to clarify the notion of CPAP failure as well as to gain approval for advanced PAP devices. Some of these sleep professionals clearly perceived their insurers as the major obstacle as they pointed out the near impossibility of even obtaining a simple bilevel device for their patients failing CPAP. So, let’s summarize this vicious circle with a few bullet points before we dig deeper into the details:
- An astronomically high number of patients do not like CPAP; we know this reaction to be true because as much as one-half of all ‘CPAP attempters’ quit – so there must have been something about CPAP that made them quit.
- Sleep doctors and sleep technologists observe this de facto CPAP failure all the time in clinics or in the labs or in communication with DME companies.
- Yet, when sleep center staff approach insurance companies to rectify the situation by promoting the implementation of a more advanced device, even something as simple as bilevel, these insurers will often balk by using twisted rules to prevent any efforts in helping the patient.
- The sleep doctors, techs, and staff attempt to explain to the insurers how the patient is failing CPAP.
- But the insurers keep bringing up various factors, which according to their rule book, must be addressed before someone can get a 2nd or 3rd or 4th chance at a different device.
- These rules seem straightforward. If the leak has not resolved, get a new mask; if dry mouth remains an issue, prescribe a chinstrap; if leg jerks are a problem, treat them with medications. And, all these steps are usually attempted but they do not always yield stellar results. My favorite rule is the one where the patient cannot reach standard compliance numbers of 4 hours per night for 5 nights per week, and then the insurer’s medical director informs me the patient “needs to try harder.” This set of rules is how an insurer often prevents patients from ever seeing the light of day in a sleep lab, where individuals could try bilevel, discover greater benefits, and then expect to receive a prescription for a BPAP device.
- With some insurers, you can eventually get them to agree with in-lab sleep testing, which is the best chance a sleep center gets to demonstrate the value of advanced PAP in a struggling individual.
- However, it is very clear some insurers absolutely never want their beneficiaries (don’t you love that word) to ever get into the lab, not only because of the expense, but also because the insurer knows the patient might be exposed to an advanced PAP mode (insurer’s read that as ‘a more expensive PAP mode’) regardless of whether this patient might appreciate a noticeably better response.
- Finally, if a center is fortunate enough to build the case for the patient to return to the sleep lab, then the definition of CPAP failure enters into the equation in ways that many sleep professionals do not appear to know how work through to move beyond standard CPAP therapy.
Let’s continue with this discussion of CPAP failure. As we have discussed numerous times in the past, a sleep tech and the supervising sleep doctor must be able to recognize expiratory pressure intolerance as it emerges while that patient’s fixed CPAP pressures are increased to attempt to eliminate RERAs. These two concepts should prove to be the chief variables in defining CPAP failure in the overwhelming majority of cases when such a problem needs to be documented in the sleep lab.
But therein lies part of the problem. Since so much imprecise information has been written on the topic of CPAP failure, no one really knows for sure what it means. In the olden days, back in the 1980s and part of the 1990s, there was a belief that the only way you could fail CPAP was to take it home and try to use it. When you returned and showed non-compliant data you were said to have failed the device. Keep in mind that one of the major scenarios in play back occurred when a patient wanted surgery or maybe a dental device, so they needed to “fail” CPAP to gain insurance coverage for these other treatment options. Many of these patients simply brought their CPAP devices home and found a very comfortable and stable resting place for the machines in their closets. Three months later, they returned to the sleep center to gain the “CPAP failure designation” and then proceed with surgery or OAT.
To my knowledge, there may be some insurers who still insist the patient must try CPAP at home in order to achieve failure status. However, over the past 15 years we have observed and routinely implemented a different approach based on what occurs upon exposure to CPAP in the sleep lab. As mentioned in prior posts, our sleep center in New Mexico specializes in mental health patients with sleep disorders, which often included some degree of anxious feelings (e.g. claustrophobia, panic, anxiety attacks) related to sleep problems in general or sleep apnea/PAP in particular. Thus, we got to know first-hand 15 years ago many of these patients were struggling with and hating CPAP and very much needed an alternative form of PAP.
Their rejection of CPAP in the sleep lab was then designated CPAP failure, because in so many of the cases patients were either freaking out while attempting fixed pressure or reporting a great deal of discomfort akin to the “drowning in air” metaphor. Either of these scenarios can be deemed CPAP failure, and we have used them successfully to punch the patient’s ticket for a night in the lab.
In my discussions with the sleep professionals at the Southern Sleep Society conference, it was very clear that many doctors or techs were just not clear how they could push the envelope in this fashion for the benefit of their patients. I spent a fair amount of time discussing this phenomenon and showing graphics to demonstrate how efforts to raise pressures to resolve RERAs would result in EPI, and that EPI is almost universally the core factor in patient discomfort that leads to outright CPAP rejection or sufficient CPAP discomfort to consider it as a failure case.
However, most sleep technologists are not trained to be looking at the expiratory limb of the airflow curve once apneas have been eliminated. Instead, the focus turns toward the inspiratory limb to eliminate hypopneas. At some sleep centers, this progression continues in an attempt to eliminate RERAs, but as the pressures increase toward this objective, the expiratory limb starts to change and frequently shows irregularities – suggesting the patient is fighting with the pressurized air. The simplest explanation for this struggle is the unnatural feeling of trying to breathe out against incoming air. The sensation is probably most analogous to sticking your head out the window of car driving 60 mph and then expecting to have an easy time breathing against the strong wind created by moving vehicle. Even inspiration can feel odd with this much air blowing inwards, but with certainty we can tell you that expiration for most of these patients feels very odd indeed.
These experiences appear to be occurring among many CPAP users, but at varying degrees of intensity, such that some patients eventually adapt to CPAP at home whereas others give up on CPAP from the word “go.” Because there is no clear-cut definition for CPAP failure a lot of sleep professionals are at a loss on how to proceed. Few recommend retitrations. Some ask their patients to take a break and start again. Others recommend trying to use new masks, chinstraps, nasal pads, mask liners and so on, yet only a very small proportion directly address the problem of higher pressures needing to treat RERAs, which then aggravates expiratory pressure intolerance. Moreover, there seems to be little discussion within the sleep community on how the auto-adjusting mode of something like an ABPAP device can facilitate the treatment of RERAs without triggering EPI. Ultimately, because there also remains a lack of clarity on the true components of normal sleep breathing, all these barriers converge to prevent providers from even considering advanced PAP devices for most of their CPAP failure cases.
Sourced from Classic Sleep Care- The Southern Sleep Society 2018 – Dr. Krakow’s lectures on PTSD and CPAP compliance gain attention among top sleep professionals.
This year I was invited to deliver two talks at the one of the oldest annual sleep society conferences, The Southern Sleep Society, at their 40th annual meeting. My talks delved into the “PTSD Sleep Clinic and Nightmare Triad Syndrome” and “Advanced PAP Therapy to Increase Compliance and Decrease Insomnia.” Both talks were received very well and sparked a number of discussions afterwards with several of my colleagues and other attendees. I would like to describe some of the hot topics that were broached from the comments and questions that emerged.
Several key points were offered in my talks and this bullet point summary will cover the most important ones. The first talk covered PTSD topics:
- In mental health circles, psychiatrists, psychologist and therapists still use the terminology of “sleep disturbances” when it should now be evident that mental health patients suffer from independent or co-morbid sleep disorders.
- This sleep disorders distinction is highly relevant in the clinical environment, because PTSD patients in particular and mental health patients in general, are frequently receiving sub-standard care due to the lack of evidenced-based assessment and treatment of their sleep disorders.
- Sleep professionals have a great deal to offer the mental health community. Including patients and professionals in providing the highest possible quality of sleep care because of our greater understanding about sleep disorders and our capacity to treat them.
- Therefore, sleep professionals need not be defensive in attempting to help the mental health community – it makes the transition to more actively treating sleep disorders in their patients.
- ‘The Nightmare Triad Syndrome’ is a prime example of this phenomenon, where in the past diagnostic criteria for PTSD included nightmares and insomnia as symptoms. Now, not only are the nightmares and insomnia recognized as independent treatable disorders in most trauma survivors, but sleep-disordered breathing in the form of OSA or UARS completes the triad and appears to occur with great frequency.
- Treatment of any and all of these three common sleep disorders not only improves the sleep of PTSD patients, but all evidence to date strongly demonstrates (nightmares, insomnia) or suggests (OSA, UARS) that PTSD symptom severity decreases as well.
- A key factor in these relationships appears to be how REM sleep manifests in sleep disorders patients. When REM is highly fragmented it not only worsens sleep disorders, but it appears to create a risk for developing PTSD. When REM sleep attains greater consolidation following evidence-based treatments, it appears to be associated with better outcomes.
The second talk delved into our work on advanced PAP therapy and compliance, including a discussion of many of our recent papers and current research projects:
- Initially, segueing from the first talk, we looked at a couple of research groups who in the 1980s and 1990s predicted there would be a very strong relationship between REM sleep in the context of sleep-disordered breathing as a highly relevant clinical factor in PTSD patients.(1,2) This introduction concluded with Ali El-Solh’s recent work showing the correlation between increasing CPAP hours of use and decreasing PTSD symptoms.(3)
- As part of this introduction, we briefly summarized our two most recent publications in which we demonstrated a strong association between the use of ABPAP or ASV in overcoming CPAP failure in general and PAP failure in PTSD patients in particular.(4, 5)
- The cardinal principles underlying our work were described as a fastidious effort to normalize the airflow curve in OSA/UARS patients, which means aggressively targeting RERAs (flow limitation events) without triggering the problem of expiratory pressure intolerance.
- Many examples were then provided showing how this fine tuning of the airflow curve (“rounding” on inspiration and expiration) leads to greater REM consolidation and better outcomes, including greater levels of PAP compliance.
- Additional data were presented on our older and more recent work showing the benefits of advanced PAP on insomnia outcomes and in particular the potential advantages of ASV over CPAP in chronic insomnia disorder cases, including sleep onset insomnia as well as overall insomnia severity.(6-8)
- In the current manuscript we are preparing for publication, we will show how the patients we recruited for the sample were unequivocally of a type consistent with chronic insomnia patients who present to primary care and mental health clinics. That is, they were not sleepy, overweight or complaining of sleep breathing symptoms. More importantly, they did report all manner of psychological symptoms and behavioral patterns typically described by chronic insomniacs. Creating a sample of this type means we were not looking at OSA patients who also had insomnia. Rather, we were looking at insomnia patients who never suspected they suffered from sleep breathing disorders. This approach means the research findings are highly relevant to other clinical populations where insomnia almost invariably presents with the focus on these psychological and behavioral issues. This elaboration also explains why it is has been so difficult for non-sleep specialists to recognize the OSA/UARS co-morbidity as only the insomnia problem is immediately visible to them during clinical encounters.
- Finally, we delved into a new measuring tool we have begun using, “Normal Sleep Breathing Time” (NSBT), which is derived from starting with a patient’s total sleep time and subtracting out all the minutes of breathing-disrupted sleep fragmentation. What remains is NSBT, and our research shows that ASV patients had a larger percentage of normal sleep breathing than CPAP patients. We will speculate on whether this finding might explain why ASV patients report greater improvements in sleep quality compared to CPAP patients.
With this backdrop, several issues and questions were raised regarding familiar themes to anyone who reads this blog. And, unsurprisingly, there was a mixture of clinical and administrative (i.e. insurer barriers) concerns that were at the heart of most questions.
A large over-riding question and concern was how to deal with the insurers’ growing restrictions on the field of sleep medicine generally and on diagnostic/therapeutic decision-making for OSA specifically. Many individuals reported that they are seeing Medicare-creep, wherein the restrictive diagnostic criteria for other insurers increasingly embrace OSA. The two most obvious examples are the complete rejection of any recognition to the RERA scoring algorithms, that is, the flow limitation events of UARS and the further narrowing of hypopnea definitions by focusing on the 4% oxygen desaturation criteria. Though no one really knows with certainty how many people are being denied care for their OSA/UARS diagnoses due to these narrowly defined parameters, I have always assumed the proportion of cases who would meet eligibility with broader definitions numbers in the millions and potentially the tens of millions.
One of the critical facets to these issues is the conventional wisdom that continues to describe something called, “mild OSA” as a condition for which treatment is allegedly controversial. The problem with the construct of “mild OSA,” in my opinion, is that such cases rarely exist when a sleep professional takes into account either the full burden of the sleep breathing condition measured on a sleep study or the full burden the patient is reporting regarding daytime and nighttime symptoms.
Let’s examine the latter first. Suppose you are treating a young adult, female patient with so-called mild OSA, and who also reports extremely vexing nighttime insomnia. She also has a current psychiatric history of severe anxiety and PTSD, and both her sleeplessness and mental health are drastically curtailing her work productivity let alone her capacity to actually work full-time. Adding insult to injury she awakens twice per night due to nocturia episodes, and on each occasion she reports losing at least another hour of sleep trying to return to the Land of Nod. Not infrequently, she must use a sedative after the 2nd trip to the bathroom, which necessitates losing the first half of a day’s work. When she does arrive at work, the irritation in her employer’s face and voice increases her anxiety levels and further compromises her productivity. She knows the only reason she’s kept her job is she’s a very talented web designer who provides valuable services to the marketing department, but she worries about losing her job on a weekly basis and borders on panic whenever she notices her employer conducting job interviews.
Though the above is a relative composite for the sake of clarity, I have treated thousands of patients with very similar circumstances where the individual’s friends, family members and co-workers just don’t appreciate the distressing nature and impairing effects of insomnia. Such patients spend years trying out various medications, and when they finally make it to a sleep center, the sleep study is read out as “normal, borderline sleep apnea, or mild sleep apnea.” The patient is then told to avoid sleeping on her back and use good nasal hygiene. Instead, the main focus of the treatment could be:
1) Find a good therapist
2) Find the right prescription medication from your primary care physician
3) If lucky enough, return to our center for cognitive-behavioral therapy for insomnia (CBT-I).
The last of these, of course, is widely unavailable at most sleep centers. What is our (Maimonides Sleep Arts & Science) treatment approach to these patients? Quite simple. We first diagnose them properly with the UARS component of their mild OSA and explain that they essentially experience no normal sleep breathing the entire night. We then explain the connection between OSA/UARS and nocturia, a topic mentioned on this blog on various relevant posts, and at my recent TEDx talk. The patient then returns for a titration study where she quickly fails CPAP because of the problem of expiratory pressure intolerance. Switched over to a bilevel (BPAP), auto-bilevel (ABPAP) or as appropriate to adaptive servo-ventilation (ASV) PAP mode, the patient experiences the highest quality of slumber she’s felt in a decade. In fact, the effects of PAP are so dramatic, she reports vivid dreaming for the first time in years; and, she is astonished by the fact that she never awakened to use the bathroom.
As I noted at the conference, this relationship between insomnia and sleep breathing does NOT mean a patient will cure insomnia only with PAP. To be sure, many of these patients still need psychotherapy or CBT-I or both, and some still need medications. But, for starters, this patient’s life can be completely turned around by eliminating her nocturia, and these results have short and long-term benefits. Last, the patient understands experientially and intellectually why the construct of “mild OSA” was largely inaccurate in assessing her condition just on the basis of the nocturia angle for starters. Several of these points are frequently omitted throughout clinical care models for chronic insomnia provided within the field of sleep medicine, and as our discussion continues we will describe other similar perplexing trends.
- Reynolds CF 3rd, Coble PA, Spiker DG, Neil JF, Holzer BC, Kupfer DJ. Prevalence of sleep apnea and nocturnal myoclonus in major affective disorders: clinical and polysomnographic findings. J Nerv Ment Dis. 1982 Sep;170(9):565-7.
- Youakim JM1, Doghramji K, Schutte SL. Psychosomatics. Posttraumatic stress disorder and obstructive sleep apnea syndrome. 1998 Mar-Apr;39(2):168-71.
- El-Solh AA, Vermont L, Homish GG, Kufel T. The effect of continuous positive airway pressure on post-traumatic stress disorder symptoms in veterans with post-traumatic stress disorder and obstructive sleep apnea: a prospective study. Sleep Med. 2017 May;33:145-150.
- Krakow B, Ulibarri VA, McIver ND, Yonemoto C, Tidler A, Obando J, Foley-Shea MR, Ornelas J, Dawson S. Reversal of PAP Failure With the REPAP Protocol. Respir Care. 2017 Apr;62(4):396-408.
- Krakow BJ, Obando JJ, Ulibarri VA, McIver ND. Positive airway pressure adherence and subthreshold adherence in posttraumatic stress disorder patients with comorbid sleep apnea. Patient Prefer Adherence. 2017 Nov 20;11:1923-1932.
- Krakow B, Ulibarri VA, Romero EA, Thomas RJ, McIver ND. Adaptive servo-ventilation therapy in a case series of patients with co-morbid insomnia and sleep apnea. Journal of Sleep Disorders: Treatment and Care 2013;2:1-10.
- Krakow B, Ulibarri VA, McIver ND, Nadorff MR.A Novel Therapy for Chronic Sleep-Onset Insomnia: A Retrospective, Nonrandomized Controlled Study of Auto-Adjusting, Dual-Level, Positive Airway Pressure Technology. Prim Care Companion CNS Disord. 2016 Sep 29;18(5).
- Krakow B, McIver ND, Ulibarri VA, Nadorff MR. Retrospective, nonrandomized controlled study on autoadjusting, dual-pressure positive airway pressure therapy for a consecutive series of complex insomnia disorder patients. Nat Sci Sleep. 2017 Mar 10;9:81-95.
Sourced from Classic Sleep Care- Increasing Compliance with Advanced PAP Therapy in PTSD Patients
Our co-authored (Krakow, Obando, Ulibarri, McIver) paper on PTSD and PAP compliance which was recently published, provides me with the opportunity to delve more deeply into the nuances of the research paper itself. To my knowledge, this paper represents a milestone in demonstrating (for the first time) that trauma survivors appear to adapt easier and use more consistently advanced PAP devices (e.g. ASV and ABPAP).
There are many aspects of the paper that also relate to OSA/UARS patients in general and not just PTSD patients. As we delve into it, keep in mind the material may be relevant to many mental health patients using PAP therapy as well as those with more classic presentations of sleep apnea. The most difficult aspect in organizing a retrospective chart review of this type (which was the research design for this study) is the need to avoid cherry picking the data that might make something appear more effective than it really is. Moreover, since our study was not with a sophisticated control group, the results only represent what are called “associations,” which is a lower level of evidence in research. Just because lots of people do well with ABPAP or ASV doesn’t necessarily clarify whether ASV or ABPAP are superior modes of treatment when they were not matched against CPAP devices.
One factor in the research, however, that provides a highly relevant degree of credibility to the work is that every patient in the study had tried CPAP in some way, but failed it, found it intolerable, or outright rejected it. Such patients then are said to serve as “historical controls,” because they tried one treatment in the past that clearly did not work for them and then tried a different mode (ASV, ABPAP) that did work. Of course, you can see if you don’t know all the circumstances surrounding their failure with CPAP, then we can’t be certain the comparisons are valid. For example, suppose before visiting our center, all the patients had attempted CPAP at a sleep center that provided very little support for its patients. Or, suppose the CPAP settings were frequently too low or too high, because the sleep laboratory they used did not take the time to fine-tune their pressure/pressures if the patient had been prescribed an Auto-CPAP (APAP) device, an increasingly common practice. In other words, there are so many variables that could alter our perspective about the nature of CPAP failure, we just cannot know reliably if we should assume CPAP could never work in these individuals.
Another major concern about the flow of patients in this sample is the problem of inherent chart reviews where individuals will have missing data or drop out along the way. Which means how could you declare that your findings are fully representative of the points you are trying to establish? In fact, you cannot, and you must report this problem as a major limitation of the study. Let’s look at our published flow chart to understand the problem:
We start out with 229 PTSD patients who marked their PTSD as moderate or worse and who had been tested and shown to suffer from OSA or UARS. The PTSD scale was a well-known, validated survey known as the PSS-SR published by Foa and colleagues a few decades back. Nonetheless, we did not conduct specific PTSD interviews with the patients to confirm the diagnosis. Instead, we selected the higher severity level (moderate or greater) as a more likely indication PTSD was probably a valid diagnosis from the patient’s perspective.
Next, to examine whether or not these patients would do well with a certain type of PAP therapy, they would also need to undergo a titration study and of course be prescribed a PAP device to use at home. This step brings us to a major design flaw in our work. Because 47 people refused to return for a titration study despite receiving clear information of their diagnosed sleep disordered breathing, and another 35 patients who despite undergoing a titration never filled a prescription to attempt PAP at home. You see that we are already down to a new subtotal in our chart review of 147 who completed the additional steps noted above. But that means we had nothing to look at in 82 (47 + 35) patients or nearly one-third of our original sample.
At this point, we don’t throw in the towel because we know that in medical research in particular, it remains a worthy exercise to make observations and analyze data on active treatment-seeking patients. Although we recognize our data would be more generalizable if all 229 patients had followed through, and in reality patients drop out of care all the time and for numerous reasons. They may even still be treatment-seeking for their sleep problems, but they simply were unwilling or unable to proceed with the PAP approach to treatment.
Of the remaining 147 patients who attempted PAP, some early good news was that only 17 patients provided no further data, because 8 got the device but let us know they stopped using it. Another 9 were lost to follow-up, so we have no info on them. That leaves us with 130 patients who were diagnosed with sleep-disordered breathing, filled a prescription for PAP therapy. All these patients appeared to be making some reasonable effort to use the device at home. There were four criteria we applied to make this observation, any one of which was sufficient to declare the patients a current user:
- They had recently received a prescription to renew PAP supplies
- They had a recent clinic appointment where they confirmed they were using PAP
- They returned to the sleep lab for retitrations and confirmed they were using PAP
- They had been in contact with the sleep center staff and confirmed their use
With these categorizations, we would have hoped to provide insights on the 130 PAP users, but here again we have the dilemma of capturing downloads off their machines either through our efforts at the sleep center or from data provided by their DME company. In fact, 28 patients had no such data available in their charts, and even after we searched other resources such as contacting their DME company, we were left with a final sample of 102 PTSD patients who met all criteria. This included the essential data acquired from the machine. Now, you see that we are down to a sample that remains sizable and is considered large as it involves 100 patients or more, but it is less than half of the original working group. Again, these adjustments may bias the research because we do not know what the outcomes were for the other folks in the original sample who did not meet all the requirements. As you can see, these are the major weaknesses of a chart review.
Forging ahead, we can still learn a lot from the 102 PTSD patients, but we must respect the fact that these individuals may be more highly motivated to pursue PAP than others who dropped out of care. Thus, when we come to the point of making our observations about their use of advanced PAP devices, we need to be realistic about how our approach may apply only to PTSD patients who are not only treatment-seeking but perhaps with a higher level of motivation than other PTSD patients.
And this flow of patients now brings us to the main data point of the study, which was 59 of these patients (or 58% of the working sample) were not only using the device, but using at a high level. They were all compliant or adherent, using nearly 7 hours per night on 94% of possible nights. Another 19 patients were called “sub-threshold” compliant because they did not meet the insurance standard of 4 hours per night for 5 nights/week or about 20 hours per week. Nonetheless, many of them were nearly compliant because they average more than 25 hours per week. However, since they might have lower hours on some nights or not used on some nights, they did not meet the insurance convention.
This concept of sub-threshold compliance was a major reason we wanted to conduct the chart review, because we knew that many PTSD patients require a longer interval of time to adapt to a device, even if the device should be an advanced one (more on this idea later). The last group used minimally, averaging a few hours for a couple nights per week. However, as we described later in the discussion section of the paper, the question must be asked, what would make a minimal user become a sub-threshold user, and what would make a sub-threshold user become a compliant user? Clinically, these questions are extremely important to answer, because they directly address some of the difficulties so many sleep centers experience in trying to help patients use their PAP machines.
Just how difficult are these patients to treat? The concept of “difficult to treat” is really hard to define. But we can at least describe some aspects of our sample so you get the big picture. All these patients suffered something approaching severe insomnia. On average, they took more than an hour and a half to fall asleep at bedtime. Once asleep, they would later spend more than two hours awake in bed. The insomnia issues alone are very problematic, since several studies have described how insomnia often interferes with efforts to use PAP therapy.
In addition to the PTSD problem in all the patients, 76% of them suffered from one or more additional anxiety disorders (generalized anxiety, panic attacks, obsessive compulsive disorder), and 82% suffered from one or more depressive disorders (depression or manic-depression). Most of the patients suffered moderately severe sleep apnea with an average AHI of 26 and an RDI of 57. With this information, we know the difference between these two metrics that our patients (on average) suffered many RERAs. The exact mean was 31 events per hour, so many patients suffered from more RERAs than apneas and hypopneas. And, patients with more RERAs may prove more difficult to treat, because when trying to eliminate the RERAs with higher pressures, expiratory pressure intolerance (EPI) is often triggered.
Indeed, this finding of the high RERA index explains in part the finding that 64 of the 102 patients developed the problem of complex sleep apnea, the condition where central apneas emerge as a side-effect to the use of pressurized air. The other 38 patients were on auto-bilevel (ABPAP).
Now that you know some of the major findings in the research, let’s back up to the beginning of the story to see why we elected to conduct this chart review in the first place. Then, we’ll spring forward again to further elaborate on key clinical points in our patients experiences with advanced PAP. Finally, we’ll end with our discussion section where we talk about how patients and sleep professionals might make use of this research and what new research is needed in this area.
The beginning of the story is not exactly what you might expect. Of course, we delved into how difficult it seems to be for PTSD patients to use CPAP therapy. And, we report on one of the most recent studies from the Walter Reed group in Maryland that shows low rates of compliance—around 30%. But, we also cited a much more interesting and motivating reason to explore PAP in PTSD patients – which is the early findings that treatment of OSA/UARS might actually be associated with a decrease in post traumatic stress symptoms. We cited two studies, the work of Youakim and colleagues in 1998 (1) and our own study in 2000 (2). Although we did not go into the details of these two works, it is worth mentioning here that both of them reported on small samples of PTSD patients who appeared to improve their symptoms by using PAP therapy.
The clinical relevance of our paper could not have been timelier, as several other researchers have published on the same or similar ideas in just the past two years. Just inserting the words PTSD and CPAP into a PubMed search will bring a list of 10 recent papers during 2016 and 2017, covering either the difficulties in PTSD patients using PAP therapy or the effects of PAP therapy on relevant PTSD symptoms. A search of “PTSD and OSA” brings up additional relevant articles. This new input is a radical change from the past where the comorbidity of these two disorders was virtually ignored, except by a very small number of research groups. Now, the advances are coming so fast that there have even been articles looking at the relationships between OSA and their impact on PTSD patients responding to specific PTSD treatments. For example, exposure therapy or cognitive processing technique, which are two of the most advanced and consistently validated therapies for trauma survivors.
We could not be more delighted to see this sudden change in interest. In fact, we co-authored a commentary on this topic, (3) pointing out the fallacy in one study that had attempted to argue that sleep disorders assessments did not required prior proceeding with the treatment of PTSD. (4) In our commentary, we cited the excellent work of my co-authors who demonstrated how the presence of untreated OSA seemed to be associated with lower therapeutic effects in PTSD patients attempting exposure therapy. (5)
In our lengthy introduction in the paper, we also describe two specific areas of interest that relate to the general population of OSA patients, as well as to psychiatric patients including PTSD cases. The first concept is that of “sub-threshold compliance,” a woefully under-researched area in PAP studies. Sub-threshold compliance is also termed “partial use.” Though research has previously shown that using PAP just 2 or 3 hours per night (and in some cases even fewer hours) leads to clear-cut clinical benefits. We often find no support for this clinical pearl in the general sleep medicine community or in dealing with insurers who seem to be caught up in the decidedly non-clinical construct of adherence. Specifically, the Medicare criteria for compliance is 4 hours per night on 70% of nights. This amount of use translates into 4 hours x 4.9 nights per week or rounded up to 4 x 5, which is 20 hours in the week. Yet, no insurance carrier (to our knowledge) will sign off on a patient using PAP 20 hours per week unless the 20 was achieved through the arbitrary and to repeat decidedly non-clinical construct of 4 hours on 4.9 nights/week over a one month period. We’ll delver further into this idea later in the post.
The second key concept is how our approach is different than most others in managing the problem of PAP compliance. Most centers use behavioral change models, psychoeducation, or other coaching techniques. Although our sleep center in New Mexico uses some of these tools as well, our primary focus targets the patients “experiential and emotional reactions to pressurized air.” Summing up the approach in the paper:
“…psychiatric patients exposed to CPAP are susceptible to the problems of anxiety sensitivity and somatosensory amplification. In our clinical experience, both of these transdiagnostic vulnerabilities are triggered when attempting to use fixed pressurized air. As CPAP delivers the same pressure setting on inspiration and expiration for any given breath, the patient is always exhaling against a pressure greater than required to maintain a patent airway, an objectively proven observation described in the sleep literature since 1990. This fixed pressure on exhalation often produces an uncomfortable sensation sufficient to trigger PAP intolerance, and in vulnerable patients, claustrophobic or panic reactions flare up. Thus, at our sleep medical center, which specializes in the treatment of psychiatric patients with sleep disorders, we observe CPAP technology itself as a major cause of low adherence or outright rejection.”
The way some people might experience headaches provides the most practical way to explain these concepts. Some people develop a headache, come up with an effective plan to treat it, and then continue on with their daily activities. Other people experience a headache, and some part of their personality makes them continually reflect back on or monitor what’s happening with the headache. This extra attention given to the headache is called attention amplification or attention bias. Bottom line is that when you pay too much attention to the headache, the problem not only fails to resolve, it often worsens in intensity. The nearly identical process occurs with unpleasant sensations from CPAP. The patient is unable to stop thinking about the mask on her face or the pressurized air being delivered, which makes either of these sensations more uncomfortable than originally experienced. Eventually, the patient notices these sensations so much that falling asleep becomes impossible.
One might think that teaching a patient to distract the mind to pay attention to something else would solve the problem. In fact, we use an imagery distraction technique. Which is self-guided daydreaming in the mind’s eye, to help people stop thinking about the mask and the pressure. Yet, despite great success with this approach in many patients, it does not bring the patient all the way into a place of comfort to be able to tolerate the fixed pressures of CPAP. This is because imagery distraction cannot always resolve the problem of expiratory pressure intolerance. Instead, by switching patients to bilevel, auto-bilevel (ABPAP) or ASV devices, we find the patients can gain comfort when breathing out against the lower pressurized air. This change in technology is what helps them to avoid paying too much attention to the “unnatural” flow of air into the nose and throat.
These approaches appear to us to be the most relevant ways in which we can help someone overcome their adaptation difficulties with CPAP. First, teach them how to distract themselves from the sensations of CPAP so that the experience is not emotionally overwhelming. Second, provide the patient with advance technology, which in and of itself leads to greater comfort and therefore acceptability from the patients’ perspective.
In the next post we’ll delve deeper into other fine points of the results from the research and finish up with our discussion points on how to use the information in clinic and what research is needed in the future.
- Youakim JM1, Doghramji K, Schutte SL. Posttraumatic stress disorder and obstructive sleep apnea syndrome. 1998 Mar-Apr;39(2):168-71.
- Krakow B, Lowry C, Germain A, Gaddy L, Hollifield M, Koss M, Tandberg D, Johnston L, Melendrez D. A retrospective study on improvements in nightmares and post-traumatic stress disorder following treatment for co-morbid sleep-disordered breathing. J Psychosom Res. 2000 Nov;49(5):291-8.
- Reist C, Gory A, Hollifield M, Krakow B. Potential benefit of sleep assessment prior to PTSD treatment. Psychiatry Res. 2017 Aug 30.
- Sexton MB, Avallone KM, Smith ER, Porter KE, Ashrafioun L, Todd Arnedt J, Rauch SAM. Sleep disturbances as predictors of prolonged exposure therapy effectiveness among veterans with PTSD. Psychiatry Res. 2017 Oct;256:118-123. doi: 10.1016/j.psychres.2017.06.044. Epub 2017 Jun 14.
- Reist C, Gory A, Hollifield M. sleep-disordered breathing impact on efficacy of prolonged exposure therapy for posttraumatic stress disorder. J Trauma Stress. 2017 Apr;30(2):186-189. doi: 10.1002/jts.22168. Epub 2017 Mar 8.
Sourced from Classic Sleep Care- The Mode Less Traveled: Revisiting Advanced PAP in PTSD Patients
Sleep Review wrote a piece on our research paper, ‘Positive airway pressure adherence and sub-threshold adherence in PTSD patients with comorbid sleep apnea’ recently published it in Patient Preference and Adherence. The Sleep Review article can be found online at their site, here. This article provided an opportunity to offer more details on our rationale for using advanced PAP in trauma survivors. In addition, their article garnered reader attention, and three specific comments were posted to which I subsequently responded. You can read these comments and replies at the link above.
In discussing our research with the Sleep Review writer, Dillon Stickle, I emphasized our “drowning in air” analogy as the core behavioral response that threatens trauma survivors when using PAP therapy, particularly fixed CPAP pressure. This sensation is very close to the feeling experienced when you stick your head out the window of a car traveling 60 mph or greater. For some individuals, it might feel like a refreshing way to clean your teeth. But, for individuals with high levels of anxiety, the strong blast of the air can lead to a startle response in your respiration. Meaning a sudden urge forces you to stop breathing if it feels like you are drowning in air. This response could occur while breathing-in or breathing-out, but when CPAP is applied, most people can tolerate pressurized air breathing-in at low-pressure settings. This is because the direction matches—you are breathing in along with air delivered inwards. Expiration changes things dramatically, because you are now trying to breathe out, but the CPAP pressurized air is still delivered inwards.
PTSD patients specifically (and many other anxiety patients in general) experience and complain about discomfort of CPAP during the expiratory phase of respiration. Patients have previously informed us they were “drowning in air,” a term we now use as a useful analogy in clinical practice. As you might imagine, the stronger the sensation of suffocation, the faster the patient will rip off the mask to stop the flow of pressurized air. Unfortunately, depending upon the intensity of the response, some patients literally reject CPAP immediately afterwards and often do not return for treatment until months or years later.
In a sleep lab, this experience can be sorted out easily before lights out when a patient is working with the sleep technologist during the desensitization, pre-titration period. The technologist is spending this time before the study commences to fit the patient with various masks. At the same time, to my knowledge, most sleep laboratories also provide the patient with a taste of pressurized air so the sensations are not surprising or overwhelming. However, at this key point, it appears many sleep labs are not providing their patients with the chance to determine whether a more comfortable air pressure delivery mode (e.g. BPAP) is more appropriate.
This lack of choice has always puzzled us, because it seems obvious enough that as many as 30% to 60% of patients will describe a negative initial experience to fixed pressurized air delivered with CPAP. In our lab, we almost invariably deliver CPAP, BPAP and ABPAP during the desensitization period to gauge the patient’s response. In a smaller proportion of cases, we will try out ASV even though the patient has not yet qualified for this more sophisticated delivery of air. As far as I can tell, one problem arises if a sleep center is wedded to the belief that CPAP is the only mode of care needing to be offered, because somehow everyone can get used to CPAP. As this thinking goes, if they cannot tolerate CPAP, then no other pressure delivery mode would provide any improvements. Another possibility might be the untoward influences of insurance carriers that push people into CPAP-only prescriptions, which then feed back to the sleep lab and inhibit sleep techs from trying other modes. There may be many other factors, and I’m not suggesting here I am aware of all the thinking and circumstances that induces so many sleep centers and labs to stick with CPAP far beyond its worthiness. And, when our field considers that as much as 50% of all CPAP users fail or reject the therapy, one would think additional options might be considered.
This failure of imagination has long affected the field of sleep medicine, and even among the few research studies on PTSD and PAP, CPAP is the predominant mode of treatment. Yet, in most research investigations the adherence rates among PTSD patients falls below 50% and often resides in the 25% to 40% range. Thus, failing to imagine other options, namely BPAP, ABPAP or ASV, leaves patients without important access to rescue devices.
The irony, as discussed in the Sleep Review piece, is that CPAP is literally traumatizing some patients, and PTSD patients would be one of the cohorts most susceptible to these adverse outcomes. Many facilities, however, gain little to no training or experience in dealing with PTSD patients for the obvious reasons that most sleep centers and labs are not owned and operated by psychiatrists or psychologists. Because we specialize in mental health patients with sleep disorders, we were persuaded by 2005 to examine other PAP options, and so our quest began with BPAP at that time. Next, in 2008 to 2010, we used a lot of ABPAP. Then, from 2010 onwards we use ABPAP in about two-thirds of our patients and ASV modes in one-third. Regarding ASV therapy, we usually discover a central apnea problem among patients fighting CPAP therapy, and so these individuals qualify for the diagnosis of complex sleep apnea and thus obtain insurance coverage. However, over the past few years we occasionally encounter an isolated case in which the patient cannot tolerate any other device, but doesn’t qualify with the central apnea issue. We have appealed these cases to insurers and also have had the patient try out the ASV mode in the sleep lab to build our case for insurance coverage. Surprisingly or not, in these latter cases, some insurers have granted coverage to the individual, because no other form of PAP therapy worked or could be tolerated.
This last point raises an interesting example of a traditional view about medical practice. That is, if a patient fails Drug A, then Drug B, then Drug C for diabetes or depression or arthritis and so on, the physician is obligated and in the insurer is usually willing to accept a petition (prior authorization) for the patient to try Drug D or Drug E. This standard of practice is widespread in managing medication regimens for millions of patients for whom the first couple drugs provided no treatment gains or inflicted serious side effects. The question should arise then as to why this formula is not widespread in the practice of sleep medicine, wherein physicians could recommend more advanced PAP therapy modes for struggling patients.
This lack of responsiveness to CPAP failure patients begs the question, because a major underlying premise that fuels this CPAP fixation is that no definition of CPAP failure has been standardized in the field of sleep medicine or among insurers. Many sleep professionals mistakenly think of CPAP failure in terms of hours of use, when in standard medical practice the patient’s poor response to treatment should almost always be the guiding principle for assessing whether someone is failing therapy. If someone averages 6 hours per night for 6 nights per week, they are easily adherent based on the arbitrary Medicare guidelines for compliance. But, these hours reveal nothing in many cases about whether the patient is gaining benefit from the device. Failure then should not be based on using or not using except in the case where someone rejects CPAP outright and needs to try something else, be it advanced PAP, OAT or ENT surgery. Failure is about the poor response to treatment, but nowhere can you find a standardized definition that would push insurance carriers to accept a patient’s need to move beyond CPAP and onto advanced PAP modes. With this information, a physician would possess the capacity to go to bat for the patient and argue the need for more advanced PAP therapy in discussions with insurers’ medical directors, many of whom sadly know very little about PAP therapy and also believe in the one size fits all model of CPAP, CPAP, CPAP.
The last part of the Sleep Review piece delved into the construct of partial users or sub-threshold adherence, wherein patients may not be achieving the 4 hours per night for 5 nights per week threshold, yet they are still using the device and receiving benefits such as decreased insomnia and sleepiness. Several papers prior to our work have reported on the status of partial users and the rationale for supporting their efforts, because of their treatment gains. But again, nothing has been codified in the sleep literature or insurance policies to make things easier for these patients to continue with their devices. This point was raised by one of the commenters, who is a sleep tech, and she astutely pointed out how PTSD patients are the type of sleepers frequently experiencing shorter sleep periods, which further complicates their difficulties with achieving PAP adherence.
Another commenter mentioned the use of OAT aka mandibular advancement devices (MAD) as an alternative to PAP therapy, given that this mode of treatment might have higher compliance rates. My only concern with OAT/MAD in trauma survivors is that I notice they often suffer more frequent episodes of temporo-mandibular joint (TMJ) dysfunction, which is a relative contraindication against using dental devices. Nevertheless, for those not susceptible to this issue, I think the use of OAT/MAD is an excellent first choice for many individuals with PTSD, given the cumbersome, and as discussed, traumatizing nature of PAP therapy. Then again, bear in mind that for some trauma survivors inserting something into the mouth may itself prove re-traumatizing among individuals who have suffered sexual assault.
The last comment was a very biting, critical and cynical paragraph directed at the insurance companies. The gist of the ideas were that insurance companies create obstacles so patients fail or otherwise drop out of care and then since the patient moves on in time to another insurance company, there is no reason for the insurer to be focusing on improving a patient’s health. What’s remarkably ironic about these ideas is their similarity to what was said about health maintenance organizations when they arose in the 1970s and 1980s. Many medical professionals railed at that time against the obvious “hoops-to-jump-through” systems. And, oftentimes these complaints were valid.
However, the deeper issue is why did HMOs arise and why do we have a healthcare system now that is no longer focused on the actual term “insurance.” Think about buying auto insurance or homeowner’s insurance. When you need new brakes, do you call your auto insurer to make a claim to get coverage? How about when your house needs to be painted? Do you call the homeowner’s agent to put in a claim for coverage? Of course not! These insurance policies reflect real-world concerns about risk. Might you damage your car in an accident? Might a tree fall on your house? How much are you willing to pay to cover the costs of these events should they occur to you? Insurance companies pool their information for millions of automobile owners and homeowners and then establish risks and rates, after which you select and pay for a policy you can afford and presumably suits a good proportion of your needs should bad things unfold.
Health insurance actually used the same system a very long time ago in which you bet on the cost of catastrophic medical illness and paid for coverage. Not everyone had the money to do so, but this form of coverage known as “major medical” was the only game in town as far as I know about the history.
The big change occurred in the late 1940s when the U.S. Congress was under severe restrictions from current wage-and-price control laws, so it passed new legislation that allowed for health insurance through employers as a benefit that was provided without raising wages (against the law at the time). While on the surface, this approach would have certainly seemed like a good idea, many physicians realized the fatal flaw in such systems. In fact, an organization was specifically founded at that time by a group of physicians, Association of American Physicians and Surgeons, and on their website you can read many stories about this history and their current efforts to turn medicine into a more free market experience.
Unfortunately, many people hear the words “free market” and imagine that it describes our current system, but there are notable differences and nearly all the distinctions center around the problems caused by having a middle man business relationship. That is, the insurance companies come between doctors and patients. Making matters worse, the government frequently steps in to put rules and restrictions on both insurers and doctors that ultimately work their way into the direct medical care of patients on an individual basis.
Think for a moment about our apnea-hypopnea index and its use in sleep medicine. Where did it come from? Is it a scientifically sound and solid way to approach sleep breathing disorders? Why is it still in use? Who benefits and who is harmed by the use of the AHI? We’ve discussed many of these points in past posts. Suffice to say that the AHI is based on soft science. Millions of people can have sleep-disordered breathing without meeting the standard AHI criteria, so that means the AHI is serving as an artificial cut-off that allows any mix of authorities, including doctors, insurers, and government regulators to unequivocally swear you don’t have a sleep breathing disorder when in fact you do.
When I spoke with Dillon Stickle about the piece in Sleep Review, this issue reminded me of a patient who I recently ran into when visiting my own primary care doctor. She was one of the first of the “non-official-UARS-but-you-really-have-UARS-anyway” patients we began to work with in the early 2000s. Not only was her AHI less than five, but her RDI was less than 15, however, when you looked at the airflow curve, there was not a single instance of normal breathing the entire night. Instead, the patient’s airflow curve was flattened as in classic flow limitations or RERAs in the UARS pattern, but because she could go 10 or even 30 minutes of flattening before an arousal occurred, the event was scored as lasting the 10 or 30 minutes. This scoring approach contrasts sharply with how 99% of all apneas or hypopneas are scored, which are almost invariably based on the standard 30-second polysomnogram epoch. In other words, when you have an apnea or hypopnea, it is exceedingly common for your breathing volume to drop 50% to 100% for 10 to 20 seconds, followed by an arousal in the brain or a full awakening. This timespan is the whole event, and the classic OSA patients repeats this cycle all night long, resulting in hundreds of scorable breathing events.
My patient, showed none of this pattern, but again none of her breathing was normal. Yet, her RDI was around 8, because of the long stretches between arousals or awakenings. We had a lengthy conversation at the time, during which I had to explain insurance would not cover her costs. I also pointed out it would be “experimental” in that I could not guarantee treatment of this “condition” would decrease her sleepiness. She listened attentively and without hesitation simply asked for instructions on how to buy a CPAP device. Within the first few weeks, it was apparent to her the device was a life changing experience that fully eradicated her daytime sleepiness and fatigue. When I recently saw her, she had reported using the device faithfully for a decade with fantastic results. Never at any time would an insurance carrier cover this “condition.”
In a free market system, not only would the experience have been altogether different, but the prices for everything the patient had to pay out of pocket would have dropped dramatically. There would have been no insurance factor to determine eligibility; only the doctor and patient would make the decision about what to try. The patient would have bought the CPAP device directly from the physician’s sleep center or from a DME company like Classic SleepCare, and the prices would have been anywhere from 25% to 50% less costly, because again no insurer or government regulator would have been sticking their nose into the business dealing. The patient as a consumer could shop for the best price instead of being forced to use a particular CPAP supplier, a policy increasingly in practice nowadays. Hitting close to home, many of our Medicare patients were disappointed to say the least when they could no longer work with Classic SleepCare. The old sarcasm, “We’re from the government, and we’re here to help,” never rang more true.
Where does one go with this cynicism and deep concerns about malfunctions in the healthcare system? To be sure, just examine the past 50 years during which no solutions have yielded consistently optimal results, but all of them suffer this same flaw: the belief that health insurance doesn’t have to follow an insurance model. Health insurance can just be prepaid healthcare expenses to cover everything under the sun. As people are often naturally greedy to want the government to solve more problems, we only need to look at the current mess that has now led to outrageously high deductibles and the ensuing complaints: “with deductibles like this, who needs health insurance?”
Paradoxically, these experiences just might lead people to realize medicine in general is moving toward cash-based programs, where there will no longer be an intervening influence from the insurers. Patients will go directly to the doctor and agree to the fee. As people begin to see the futility of the high deductible programs, they will start to concentrate their resources in two ways. First, finding the best catastrophic or major medical policy (sound familiar?), and second look for new opportunities in healthcare like internet services or cash-only urgent care clinics. I don’t think we can say these approaches are booming in the economic sense, but the ideas are booming and about to explode across the country sooner than later. Just consider all the people who now sit at their laptops for psychotherapy treatment instead of traveling to a clinical site.
The wave of the future for healthcare economics is decentralization. Why go to a doctor’s office and wait when instead you can schedule an online appointment to discuss a problem that often may not require a hands-on physical exam. In sleep medicine, we want to know what our patients’ data means regarding leak, residual breathing events, persistent central apneas, hours of use, and subjective response to the PAP machine. Telemedicine resources can cover nearly all this information. Why would anyone want insurance to be involved in the middle of these scenarios?
The irony of ironies is that a sleep doctor sitting at home in his or her pajamas could eventually provide anywhere from 50% to 90% of the knowledge and information that someone needs to acquire and then apply to improve the response to PAP therapy. As you know from past posts, the sleep laboratory remains a critical resource especially for struggling patients, but the telemedicine wave will probably reach so far that eventually the advances in home testing will be at the same level as the sleep laboratory. When and how we get there depends on many factors, but the more we rely on insurers and government regulators to intercede “on our behalf,” the longer it will take to arrive there, and the longer it will take for more sleep physicians to advocate for advanced PAP therapy devices in CPAP failure patients.
Sourced from Classic Sleep Care-Totally CPAP by Dr. Steven Park: Part X (Final Words, Thoughts and Controversies)
Let’s conclude this ten-part blog series of Dr. Park’s book, Totally CPAP, with a review of his final chapter. Dr. Park brings up highly relevant topics in summarizing key points in his programs, as well as offering additional options on how to proceed should CPAP simply not be the right fit for you. We will delve deeply into some of these themes, because they bring to light crucial controversies in the field of sleep medicine on how to deal with CPAP failure.
At the outset, I wish to clarify some points from a recent conversation with Dr. Park in which I learned that he performs all the CPAP coaching himself in his office (very impressive!) and despite being a surgeon he is a stalwart defender of the use of PAP therapy in the majority of his patients. For those of you who follow his website, blogs and podcasts, you also know he is quite iconoclastic and remains steadfastly in the hunt for new and better ways to effectively treat sleep apnea patients. The most remarkable thing about Dr. Park, in my opinion, is to see someone attain such heights of excellence while simultaneously at the mercy of the various sleep labs and DME companies. I say this because he does not operate a sleep center or sleep laboratory in his own practice. Given the advances he has made already in his sleep career, I would strongly advise him to open up his own sleep center for which he would undoubtedly function superbly as a medical director of both a center and a lab. Knowing how rapidly he acquires knowledge, I am certain he would be successful, and I hope many other professionals will encourage him to consider such a path at some point in his career.
I trust this backdrop will also make very clear the distinctions between Dr. Park’s practice models and that of mine at Maimonides Sleep Arts & Sciences. Nearly all of which I would attribute to Dr. Park not gaining the opportunity to deal directly with a sleep laboratory and numerous sleep technologists. In opening my center (Maimonides Sleep Arts & Sciences) 16 years ago and working at a university sleep center for several years prior, there is no question that my largest library of knowledge came from direct contact with a series of sleep technologists and of course, my patients.
And, this approach to knowledge acquisition brings me to one of the very first items Dr. Park asks of his patients, which is “what if you tried and failed CPAP, APAP or BPAP?” And, here is where our paths diverge, because my next question would be, “and what about ABPAP or ASV?”. Dr. Park humbly and honestly engages his CPAP failure patients within two frameworks:
- A) Those not receiving an inadequate response to PAP
- B) Those reporting the worsening of sleep when trying to use PAP
These circumstances, where the cure is not just worse than the disease, but the cure worsens the disease, are what drove my sleep technologists and me to attempt to find a new way. We assumed this worsening of sleep must be considered a huge “red flag,” signaling a need to explore new treatment pathways. At first, the path was bilevel or BPAP in 2005, but ultimately between 2008 and 2011, the answer turned out to be ABPAP (auto-bilevel) and ASV (adaptive servo-ventilation).
And, what drove us to these advanced technologies? Fixed pressure, whether it is the single fixed pressure of CPAP or the auto-adjusting fixed pressure of APAP (it’s fixed in time and space for every breath taken), or the fixed settings of BPAP (it’s fixed at one pressure when you inhale and fixed at a lower pressure when you exhale) is not natural to human respiration. And, though some people can and do adapt to fixed pressure models and many report excellent responses to these devices, there remain CPAP failure cases at a rate of 50% or greater at any given moment in most clinical practices. Shockingly, instead of asking the question, “what could possibly be wrong with CPAP?” most sleep centers dance around the technology side of the equation and keep foisting the blame upon patients, demanding they work a little harder and a little longer. Apparently, if you simply persist in your efforts at CPAP or APAP or BPAP, you will succeed—except you don’t—if you are among half of the patients who fail miserably with many of these modes.
We have now treated several thousand patients in these circumstances, and their stories are nearly identical. They were never offered an advanced mode of therapy. They were never informed about advanced modes of PAP, and, most glaringly, they were led to believe that they were the cause of CPAP failure. Somehow, they just could not be properly educated on how to use PAP. Somehow, they just could not adapt because they did not try long enough to adapt, and somehow, they really weren’t cut out for PAP therapy.
This hogwash by the way, is the same line of reasoning we hear repeatedly from medical directors (almost never board-certified sleep physicians) of insurance companies who direct us to tell our patients to try a little harder and try a little longer or else just give up and try again in the future when your motivation is a little stronger because you have been suffering a little be more.
Dr. Park raises the most salient question of WHEN should someone be able to detect the difference in the effects of PAP therapy on sleep quality, especially in the context of someone having experienced years of sleep debt from untreated OSA/UARS. After all, if you have suffered for decades from horrible sleep deprivation due to the years of chronic sleep fragmentation from hundreds of respiratory events during the night, why would you expect to feel better right away? It’s a great question, but the fallacy is one often overlooked by so many sleep physicians, even among those who run their own sleep operations. Dr. Park’s question is spot on, but because he is not in the trenches of a sleep lab facility, he does not have the opportunity to see why in fact a person could experience a transformative single night of higher quality sleep with advanced PAP. Indeed, this magical night of sleep is experienced by 70% to 80% of our patients the very first time they use ABPAP or ASV, and they respond tellingly by informing us, “I slept better on this one night than I have ever slept during five years of CPAP.”
Becoming aware of this phenomenon not only corroborated our experiences with advanced therapy but drove us to understand the scientific basis for such superlative results. The answer proved to be close at hand. When you treat flow limitation in most CPAP failure patients, you can avert the problem of expiratory pressure intolerance by manually titrating the auto-adjusting algorithms of the advance PAP devices—either ABPAP or ASV—and the result is one or more obvious changes in sleep architecture as described next. These stunning results appear to correlate with the patient demanding to know, “why wasn’t I offered the chance to use this device ‘fill-in-the-number’ years ago?”
These sleep architecture changes included more periods in the night with fully normalized airflow, less time spent in lighter stages of sleep, more time spent in consolidated REM sleep, and so on. None of these magical experiences for our patients were based on magic. To paraphrase William Jefferson Clinton, “it’s the technology, stupid!”
Yet, repeatedly, thought leaders in the field of sleep medicine, most of whom work in top-tiered academic sleep medicine centers at major universities around the world, pay scant attention to the role of technology in improving patient responses to PAP therapy. Even less than scant attention is paid the nexus between efforts to titrate our RERAs while ameliorating the problem of expiratory pressure intolerance. And this turning of a blind eye toward technology has greatly narrowed the options that would so greatly benefit CPAP failure patients. Nowhere is the evidence more robust, to reiterate, in the first night titrations of CPAP failure patients introduced to ABPAP or ASV when manually adjusted by the sleep technologist. And the other variation of their responses quite commonly was, “Where was this device when I was first treated?”
In sum, there is another way, but this way remains hidden from view because so many people in the field of sleep medicine just cannot imagine how technology might solve the problems of PAP therapy. This failure of imagination is incredibly ironic as I have mentioned before when one considers the technological age we are living in where invention after invention and upgrade after upgrade to these inventions are dramatically improving the quality of our lives. Hopefully and much sooner than later, hanging on to CPAP will in fact be perceived as planned obsolescence, after which more and more sleep professionals will demand newer technology for their patients. Such a day cannot arrive soon enough, in my opinion.
Dr. Park then moves on to spend time going over certain principles for those who will switch from PAP to OAT or surgery, and I think his singular comment here is worth spelling out: “There are good published guidelines by various specialty societies that are great rules to follow, but an in person evaluation by a qualified sleep surgeon is away best.” He also lists several other alternatives such as the didgeridoo wind instrument and tongue exercises that some people may want to explore. In your investigation of mandibular advancement devices (oral appliance therapy, OAT), he also suggests how the role of sleep endoscopy can provide precise data on likely success rates. To that I would add the standard jaw thrust maneuver where you hold your lower teeth (thrust) forward in front of your upper teeth, and with your lips still closed, notice whether nasal airflow is any smoother or the volume is any larger.
Next, there is a discussion about the value of the online community, and in general I agree with Dr. Park’s strong recommendation to engage with other patients in this realm. Undoubtedly, you will find social media an excellent way to communicate on various issues, many of which other sleep apnea patients have already experienced and resolved. The main weakness to online communities is that they are only as effective as the knowledge base being discussed. One of the most reliable and worthy sites is CPAPTalk.com, which covers numerous areas and where much informative and entertaining discussion occurs. Yet, you will not find many answers there about manually titrating ABPAP or ASV in a sleep lab. Moreover, you are more likely to find skepticism about the use of advanced PAP devices, because even among most sleep apnea patients the lingua franca by and large remains CPAP then, CPAP now, and CPAP forever with only an occasional hat tip to APAP or BPAP. Not to mention almost no recognition of advanced PAP.
Then, there is a discussion about data capture, including your own device’s download plus the use of 3rd party software to more easily capture data. Although I anticipate such software will continually improve, serious concerns currently revolve around whether they provide accurate data on flow limitations. Other concerns involve accuracy of standard breathing event indexes such as AHI as well as leak measurements. In both instances, when we are using data downloads from the device itself, we target the AHI to be less than 1.0 and preferably less than 0.2. Leak numbers have greater variability due to mask types and PAP modes, but again, we are targeting less than 4 lpm in all patients and preferably zero leak. Therefore, when using other software, I want my patients to know precisely where things stand and whether these targets can be met.
I very much appreciate how Dr. Park encourages you to remain vigilant on a nightly or weekly basis to look for small changes that might interfere with your response. Chronic nasal congestion could worsen AHI, flow limitation, and leak, so it should be addressed aggressively. Some patients unequivocally must switch to a full-face mask and some unequivocally must use a chinstrap. Remarkably, many sleep professionals often do not recognize that some patients unequivocally require FFM and a chinstrap together.
As Dr. Park concludes, the most pro-active patients who show the most resourcefulness are the ones who achieve the best responses. But, what in fact is the best response? One of the most common questions we ask of our patients is, “Do you think this is as good as it gets?” Or, “Do you think there is still ‘more better’ to be attained?” This type of conversation between patient and sleep professional is essential for any attempts to truly find the pathway to optimal results.
Wrapping up his discussion, Dr. Park brings up a huge administrative factor regarding your medical records. He astutely points to the necessity for obtaining and maintaining copies of most or all of your sleep records, especially your sleep studies. I can assure you, you will be eternally grateful to Dr. Park for taking this step as it will allow you much easier access to equipment and supplies whenever you move to a new location or switch to another sleep center.
It has been a great pleasure as well as an honor to read and review Dr. Park’s book,Totally CPAP. I have learned a lot and hope some of my comments have also added to your knowledge base. As I indicated previously, this book is an outstanding resource for new PAP users, and I admit that the book would be quite helpful to many sleep doctors and sleep technologists, who will learn more about a sleep apnea patient’s perspective, struggles and solutions in working with sleep medicine professionals to learn how to use CPAP.
Thank you, Steven, for your practical, valuable, and easy-to-understand contribution to the sleep medicine literature.