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Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 7

Now that we have completed a look at the six challenges, we move to the second main heading in the SAPCON article in Sleep Review, entitled PATIENT-SUGGESTED SOLUTIONS. This section is remarkable for its brevity and yet includes nearly all essential resources and strategies that must be considered in optimizing the care of OSA/UARS patients. Not only is the information the epitome of “less is more,” but also I would argue most sleep professionals would gain more by reading and attending to this set of prescriptive steps than sifting through lengthy review articles on the topic of PAP adherence.

My comments on each of their bullet points (below) attempts to provide some clarifying approaches to the steps they have outlined, but reading this section for yourself whether a patient or professional will expand your understanding of how to tackle numerous obstacles that interfere with any PAP management model.

In the introduction to this section, the authors point out how solutions derive from “improving basic communication” as well as efforts to “individualize treatment and management.” Sounds simplistic, right? In fact, it is exactly what most patients complain about not receiving while struggling with PAP. That is, most PAP patients want and need more information more readily available and tailored specifically for their circumstances and difficulties. Undoubtedly, all patients want this approach for any medical illness, but PAP management is different for all the reasons discussed in the prior posts on SAPCON and especially because we are dealing with a vexing and unwieldy physical device that is unique in comparison to prescribing a drug. To extend the analogy, PAP requires the engagement in a markedly different type of system compared to how one receives a medication through a pharmacy.

 

  • Determine with each DME you work with the type of information addressed with each patient by sleep staff and DME staff, then fill in the cracks, which should naturally lead to who and when to call.

 

Comment: Excellent advice on paper, but its application always has the potential to be sabotaged by the turn over at either entity. In our experience turnover is much greater in our local DMEs than in our sleep staff, thus it is common for things to fall through cracks among less experienced employees no matter how dedicated they are to the job. On the other hand, administratively, I have been impressed with how often DME staff will alert us to rules and regulations affecting their patients’ access to resupply or even initiation of PAP treatment. The bottom line is we always err on the side of caution, which means assuming the current reliability of a particular DME may be lower than expected. Although this approach requires more work at our end, unfortunately we have not found consistent utility in providing constructive feedback to local DMEs, in contrast to our excellent working relationship with Classic SleepCare. Instead, we have grown to accept the waxing and waning pattern of diligence, which is most pronounced within the national franchise DMEs, perhaps due to their competitive bidding successes leading to lower reimbursements and plausibly fewer resources.

 

  • Provide useful information in writing at appointments including key terms, website links, and a patient process map.

 

Comment: In medical school training and residency (1979-1986), we learned the importance of providing patient’s with written instructions at the end of an appointment so they would refer back to the steps needed going forward. Remarkably, to this day, a sizeable but unknown proportion of physicians do not provide written instructions for patients at the close of an encounter. In addition to written instructions, all of our sleep study reports (copies of which all patients receive) include a list of 30 key terms and their abbreviations. Regarding website links we have several on our own site to which we regularly refer our patients:

  • Our nasal breathing video series has proven reliable in instructing patients to seriously examine and treat their nasal hygiene problems.
  • Our sleep obesity series provides a detailed discussion on how weight loss may be very difficult for individuals chronically fighting off fatigue and sleepiness from untreated sleep disorders.
  • Last, our very short video on the problem of nighttime trips to the bathroomexplains the link between OSA/UARS and nocturia.
  • Our main site sleeptreatment.com also provides numerous links on sleep disorders, treatment pathways, and assorted other resources to help patients increase their sleep knowledge.
  • And, our new patient process link provides a thorough description of what to expect from the ABCs to the ZZZs of a sleep treatment program in the form of an easy to read 16-page pdf that can be viewed online.

Some sleep centers no doubt have more or less of these types of resources, yet nothing replaces the human factor of being able to call the center to discuss a problem and gain a solution from a sleep professional – either at the sleep clinic, the sleep lab, or the DME.

 

  • Follow-up calls early on or in timely periodic fashion should be a regular component of any sleep center or DME operation.

 

Comment: We concur with this point in spirit, but practically it is often the case more so than anyone might like to hear that lots of patients simple do not want to be bothered, because they view their efforts to treat their sleep problems from a different perspective than the sleep professionals. One typical patient encounter, probably seen at most sleep centers, is an individual who either rapidly gave up on PAP therapy and is in no hurry to start over or is using the device at a level satisfactory to him or her regardless of fair or worse outcomes. In other words, people live busy lives and once they have attempted PAP, they often make quick decisions to reject it if they cannot make the system work for them. Or, if they are using the device a few hours per night on a few nights per week, they presume this progress is an adequate start. While it is true many patients who quit early could be salvaged, it is not always easy to predict who will be receptive to coaching and new efforts. Will early follow-up help pinpoint who to maintain contact with? Certainly, but early contact is only as useful as the degree of motivation within the individual. We use early contact follow-up routinely and are routinely disappointed by those individuals who simply ignore any and all contact efforts. However, if we look at the people who remain motivated, there is no question that regular follow-up means a great deal to these individuals and serves to increase their motivation as well as enhance their skill set to be able to use PAP therapy.

 

  • Discussing range of treatment options and their risk/benefits.

 

Comment: We discussed this concept in Part 3 of the series The only reminder I would add is that in nearly all cases, a patient is going to achieve the best response when using a PAP device, and most likely an advanced PAP device such as ABPAP or ASV, albeit some patients do so with CPAP, APAP, and BPAP, often with the addition of EPR systems. But, it cannot go without saying that OAT or a surgical intervention plays an important role in OSA/UARS treatment because of so many patients unable to tolerate PAP or unwilling to persevere due to the numerous hassle factors. A 50% improvement with OAT or a surgical intervention is most decidedly better than zero treatment, i.e. PAP rejection or intolerance.

 

  • Be on the lookout for patients with greater complexity, including those with complex sleep apnea as well as co-occurring mental health processes such as PTSD and insomnia.

 

Comment: To their list we would add leg jerks, nightmares, hypnotic dependency, anxiety and depression as well as a host of co-morbid medical conditions, which in their own right also cause many extenuating circumstances in managing the patient, not the least of which is to worsen anxiety and depression symptoms. Heart failure or pulmonary patients dealing with life-threatening illnesses do not enthusiastically embrace something like PAP, because it is initially perceived as adding another barrier to catching one’s breath. Overall, as we have described in numerous related posts, it is imperative to make the PAP therapy experience as comfortable as is humanly possible. And, as we have described, the ABPAP and ASV devices provide added comfort by eliminating or drastically decreasing the problem of expiratory pressure intolerance. To underscore the point made by the SAPCON authors, I would vigorously argue that the complex patients are the norm at most sleep centers, because it is rare to find so-called straightforward cases of OSA. Thus, I always encourage other sleep doctors to use the “guilty until proven otherwise” approach, that is, by maintaining the attitude of “a more than meets the eye” perspective, fewer patients will reject PAP or be lost to follow-up.

 

  • Patients who use PAP regularly yet remain symptomatic or who complain about the “awfulness” of having to use PAP are clearly headed down paths of noncompliance; therefore, it is essential to tease apart the issues that continue to prevent them from receiving benefits or from tolerating the device with a better mindset.

 

Comment: The key point the authors are exclaiming is the necessity to be very specific in querying the patient on what might have been missed previously or what simply is now coming to the forefront and creating the lack of benefit or interfering with efforts to use PAP.

While a list of factors needing to be addressed is not lengthy, it is noteworthy how often we hear about simple things being overlooked, according to second opinion patients we have treated. We have discussed many of these issues in numerous prior posts; here, I want to focus on out of the ordinary tips that address these italicized issues (below) that may fall through the cracks:

Leg jerks: Many sleep docs still do not appreciate leg jerks are not categorically linked to EEG arousal activity that disrupts sleep. In other words, leg jerks without EEG arousal may still be disrupting sleep in what are known as “autonomic arousals”—changes occurring in the brain yet invisible on the sleep study. Thus, patients who continue to demonstrate leg jerks without EEG arousal will often discover that treatment with medication markedly improves their response to PAP.

Aerophagia: While many sleep professionals may jump to the conclusion air swallowing must be related to mouth breathing or mask leaks, two frequently overlooked causes include leg jerks and chronic rhinitis. It appears leg jerks trigger the patient to swallow for unknown reasons. Rhinitis, especially of the nonallergic type frequently associated with post-nasal drip, causes swallowing all night long. One or both conditions must be treated in such patients to eliminate aerophagia.

Device Maintenance: Many patients imagine their equipment can be used night after night without cleaning the tube, headgear, and mask. Even a chinstrap can be washed. For the psychological benefits alone, it is a very refreshing feeling to climb into bed and wear a clean mask with clean headgear, breathing air through a cleaned tube and humidifier system. And, this cleanliness may yield other benefits by decreasing bacteria counts on the equipment and potentially reducing risk for infections.

Self-Reported Poor Responses: Do not trust the outcome surveys patients complete at follow-up appointments unless these measurements are consistent with the subjective complaints or improvements described by the PAP users. Many patients show values in the normal range for sleepiness, fatigue, and insomnia, and yet they know something is not quite right. Here, it is essential to probe the patient, because something is missing in the treatment package or something is incomplete in the diagnostic assessment. Clinical depression is one of the more common co-occurring conditions that confuse the patient and the doctor when trying to assess PAP outcomes.

Psychotropic Medications: In our society, far too many patients are hurriedly placed on medications for mental health symptoms. Although a sizeable proportion of these patients can and do benefit from improvements in mood and decreases in anxiety, nearly all these drugs cause side-effects, many of which directly or indirectly act on sleep architecture (stages of sleep) or to aggravate leg jerks. Because most sleep doctors are more likely to see patients downstream from when the patient was placed on these drugs years earlier, it is a delicate and lengthy process just to broach the topic of whether or not these drugs are interfering with the patient’s specific response to PAP or the general efforts to improve sleep quality, continuity, and duration.

Headgear and mask discomfort: We are now fortunate to live through the midst of a technological revolution on mask design, which has led to large improvements in comfort and usability. Dedicated sleep technologists at sleep centers or respiratory therapists at DMEs must diligent leave no stone unturned in helping patients to solve these problems. With the new array of mask equipment, the choices are so much broader and so much more precise; virtually all mask issues are now solvable. Plus, mask liners reflect another layer of mask technology development to improve fit and comfort.

Nightmares: Many patients using PAP therapy report a subsequent decrease in disturbing dreams. Therefore, in the early going, a patient with co-occurring OSA/UARS should be reassured that chances favor a reduction in bad dreams with effective use of PAP. For those patients whose nightmares do not recede or in rare cases worsen, there are numerous nightmare treatment strategies available, chief of which are Imagery Rehearsal Therapy and the drug Prazosin. In these less common cases, patients may stop using PAP until the nightmares are treated.

Insomnia: There are many strategies for treating insomnia among patients with OSA/UARS. Many sleep doctors will initiate medication trials, but we do not favor this approach. Cognitive-behavioral therapy for insomnia is a gold standard treatment; and, though many patients see a lessening of insomnia with PAP therapy, among individuals with persisting insomnia complaints discretion is often needed to determine whether PAP should be deferred temporarily until the patient completes a CBT-I course, after which PAP can be more easily re-initiated.

 

No doubt, you can think of other snafus as well, but as the SAPCON authors declared we must be vigilant and precise in our discussions with our patients to drill down to the level where the problem is occurring, so we accurately identify the issue, and then formulate a more complete plan for resolution.

Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 6

This article is the sixth in a series, following:

Part 1 – They said I need a machine, that’s it?
Part 2 – So I have sleep apnea? So what?
Part 3 – Are there options besides CPAP?
Part 4 – Frustration rapidly leads to non-adherence
Part 5 – Delays in diagnosis or outright misdiagnosis.

The sixth challenge, “So, who do I call?” segues into their second main heading, entitled PATIENT-SUGGESTED SOLUTIONS, so we will lay the groundwork for the solutions section with our comments on this final challenge.

The first quote of the challenge says it all: “I often get the sense that equipment providers expect physicians to educate patients, and physicians expect home care providers to educate patients.” And, of course the unhappy ending: “This expectation on each side often leads to little or no education for the patient.“ The bottom line is the patient does not know what he or she does not know, and therefore the problem is not only discerning who to call but also when to call and what needs to be asked.

This specific issue is a flaw in the administrative workings of sleep medical practice and no clear solution exists. However the cause is clear: the federal government’s decisions to separate clinical practice from the sale of durable medical equipment (aka home medical equipment) inhibits practical ways to communicate between sleep clinics and DMEs. The confusion generated by this peculiar relationship drains energy and motivation from both entities while they are attempting to help their mutual patients. Working with one hand tied behind the back is what comes to mind in these situations.

Even when you have an ideal arrangement, like Classic SleepCare, where the focus is almost exclusively on sleep apnea products and services, the separation from the sleep center environment can sometimes result in problematic communications, mistakes in prescriptions for PAP devices and masks, and challenges in managing follow-up. These problems are especially rife when you imagine what transpires in typical DMEs that serve thousands of other consumers for all sorts of products unrelated to sleep (e.g. wheelchairs, crutches, hospital beds, etc.).

Because of the belief that sleep clinics selling PAP equipment leads to corruption and abuse, and because of the perception of an inherent conflict of interest, very few sleep centers have been willing to move into the DME branch of sleep medicine. You can see the difficulties that would arise in such interactions when a physician first must convince the patient of the factual basis of a diagnosis of OSA or UARS and then start in with a sales pitch on the great value of investing in a PAP therapy treatment. The perceived conflict of interest now seems or feels like a real conflict to some patients.

Regardless of this glaring flaw in the infrastructure, both DMEs and sleep clinical operations must find a way to solve patient problems as they emerge. However, the factor of poor timing can lead to a rapid deterioration in the patient’s response and motivation, because it is well known in our field that patients who struggle early in trying to use PAP often drop out of care, often in the first week or initial few days after filling the prescription for the device.

Clearly, some DMEs and sleep clinics are better organized and efficient, and therefore more capable of delivering effective services to their OSA/UARS patients. However as capacity drops off in either facet of care, it is not uncommon for patients to feel as if they are bouncing back and forth between a DME and a sleep clinic. Who steps up and solves the information gap when the patient needs answers to questions about masks, leak, chinstraps, pressures, nasal congestion, headgear, mask liners, mouth taping, leg jerk medications, aerophagia, mouth breathing, skin irritation, and so on? Most likely the patient will get answers from both resources, but how and when they receive the answers frequently requires plodding through a very muddy field.

We recently set up a new system with walk-in data downloads for patients who are clearly struggling and need to rapidly address concerns about pressures and leak early on in the process. We also use a special CPT code (94660) to arrange for patients to meet in timely fashion with sleep technologists. A third option currently in trial is to decrease the number of scheduled appointments with the sleep doctor (me) in order to accommodate more urgent patients who may call in with an acute problem, especially one like “giving up.” With a few unfilled slots in the schedule, we can bring these failing patients into clinic the same day they call or within 24 or 48 hours, depending upon the urgency.

Still, these solutions can only achieve so much, and when it comes to mask issues we frequently make direct requests to patients’ DMEs for more immediate attention to the problems, and we find most DMEs accommodating when we have specifically identified the problem and requested urgent follow-up on their end.

Who to call and when to call remain big issues in the field of sleep medicine, and whenever communication between entities proves limited, frustrated patients report dissatisfaction with their care. As easy as it is to suggest improving communication will overcome these barriers between businesses, the current infrastructure simply does not provide a lot of opportunity to do so. As we move into the solutions section of the SAPCON report, we will extend the discussion to other sorts of problems while revisiting this communication issue as well.

Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 5

Last year, Sleep Review Magazine published an introductory story about the SAPCON project, which focuses on collecting input from patients with sleep apnea as a way to “democratize” research and gain valuable insights to promote more effective treatments. Sleep Review published a follow-up story to discuss the preliminary findings, which you can read about here on pages 26-28. 

This article is the fifth in a series, following:

Part 1 – They said I need a machine, that’s it?
Part 2 – So I have sleep apnea? So what?
Part 3 – Are there options besides CPAP?
Part 4 – Frustration rapidly leads to non-adherence

Fifth Challenge: Delays in diagnosis or outright misdiagnosis.

In this section of the study, the authors focus on the long-standing problem of diagnostic delays, which, for some patients, may be up to a decade or more. In particular, females and ethnic minorities demonstrated disproportionately low rates of referrals and thus diagnoses. The authors infer the crucial point regarding so many of these undiagnosed individuals: the development of cognitive impairment leads to executive dysfunction. In other words, these individuals may have greater difficulties in understanding the nature of their problem and become frustrated in their efforts to overcome it. We refer to this process as “the disease protects itself”, through which OSA damages the mind in various ways, the individual struggles to effect the best treatment options, and in many instances the condition defeats the therapy.

Another noted problem is the variability in sleep apnea phenotypes, meaning the signs and symptoms that patients describe to referring doctors, which then trigger a referral to a sleep center. This issue remains especially problematic, because so many primary care physicians still believe snoring and sleepiness are necessary symptoms to qualify for a sleep test.

In the last segment of their discussion, a quote from a patient regarding what presumably refers to expiratory pressure intolerance stated: “I can’t keep the mask on all night, it feels like it’s breathing against me, so it goes off.” And then a follow-up quote with a similar patient, speaking to the approach we use regularly among our second opinion patients: “One sleep doc told me I wasn’t giving it enough time. I’d struggled on PAP for years. Finally, a second opinion showed I had complex sleep apnea. My new [advanced PAP] treatment is making a massive difference.” This last example refers to a patient having waited years to ultimately receive the correct diagnosis, complex sleep apnea, which is the condition where standard PAP, usually CPAP but also from APAP or BPAP, triggers the side-effect of central apneas, thus requiring the use of more advanced technology.

These two points, delay in diagnosis, which is really delay in patient referral, and misdiagnosis are banes on the field of sleep medicine. Regarding the former, one would think the epidemic of sleep apnea would finally bring some urgency into the world of primary care. The pace of referrals in the various sleep systems may be increasing but nowhere near the capacity of what could be provided if all sleep centers were maxed out. Unfortunately, there is little to be done on this issue other than long-term strategies, because patients frequently do not take sleep issues seriously nor do their doctors probe for sleep disorders in an efficient and timely way.

Once someone is undergoing care in a sleep center system and attempting PAP therapy, the scope of opportunities is greatly widened to aid the individual. However, many sleep centers still do not realize how to expand their range of services.

We see numerous cases every week in which patients’ objective data downloads indicate the presence of central apneas. Many of these patients started at our center and were using either APAP, because they were directed to by an insurance carrier that denied them the opportunity for a titration in a sleep lab, or they were using ABPAP, an advanced PAP mode that provides very precise improvements in treating residual breathing events, but which also may trigger central apneas in a number of patients. Every week we are recommending to patients to return to the sleep lab for evaluation of these central apneas to determine whether an ASV device would prove more effective, presuming the patient will qualify for the diagnosis of complex sleep as described in the SAPCON authors’ example.

It should be bad enough that other sleep doctors are not picking up on this finding of residual central apneas and actively seeking to resolve the problem, but it turns out this system wide lack of responsiveness is a proverbial tip of the iceberg in the deeper problems affecting such patients. Commonly, when this issue is presented to other sleep doctors, a frequent refrain is to declare a few central apneas mean very little and should dissipate over time anyway. Interestingly, you will meet sleep physicians who marshal the same talking points when treating a CPAP user, who three years after starting still shows a small number of residual central apneas. Even if they cannot provide a rationale for the persistence of central apneas, they will fall back on “what are a few central apneas in the big picture?”

The finding of a just a few central apneas in any patient at any time is not necessarily grounds to immediately insist he or she needs ASV therapy, but the deeper problem is objective data almost unequivocally indicates a serious adaptation problem emerging, one that often does not resolve. The specific adaptation problem is the patient needs higher pressures but cannot tolerate higher pressures. Although unproven and difficult to research, our working theory describes this phenomenon as a simple mechanical response. Namely, the individual feels the pressure in the throat as a series of uncomfortable sensations, which then triggers the person to cease breathing in the same way someone feels a sort of breathing startle when sticking her head out of car window travelling at high speed.

The paradox here is the need for the higher pressures to eliminate residual breathing events (flow limitations, obstructive hypopneas, and obstructive apneas), yet the higher pressure triggers a mechanical response, leading to the iatrogenic side-effect of central apneas. Said more simply: shove too much air down someone’s throat and the brain reacts to cease breathing temporarily.

It should be clear to sleep professionals this double-bind is quite common in clinical practice, and it may be observed by more sleep docs and sleep techs than we can know, but it is not acted on in dynamic and timely fashion. And, in my experience and in my opinion of the larger field, I assume this double-edge sword is a leading and potentially the greatest single factor in preventing patients from long-term use of PAP therapy or in gaining anything close to optimal results.

This point of view when taken to its limit creates a great deal of consternation in managing patients whose health insurance systems consistently deny them the opportunity for more precise fine-tuning of pressure settings in the sleep laboratory. Although these barriers have been in place throughout the USA for several years, we are now seeing this rigid policy manifesting in more of our patients in New Mexico. And, I will mention of the last 10 patients on auto-CPAP (APAP) who have never been tested in a sleep lab for diagnostic or titration purposes, all showed objective issues on their data downloads that warrant further investigation under the microscope of the sleep lab. To date, only one of the 10 has received permission to be further evaluated in the lab.

Unquestionably, some of these patients are gaining benefits from using APAP, so it is not unreasonable the insurance carrier insists that mask issues and related leak and mouth breathing problems should be effectively managed from a cost-savings perspective by the DME company or by staff at the sleep center without the patient needing a lab retitration. We accept this perspective and work with patients through their DMEs or via our sleep techs to find solutions to these specific problems. However, when no solutions emerge as is common in 30% of OSA/UARS patients, and these same patients are manifesting residual breathing events such as flow limitations and central apneas, then the patient needs to receive a higher standard of care in the sleep lab. While all these patients are usually reporting some improvement in outcomes such as decreased sleepiness, nocturia, and insomnia, their completion of follow-up surveys for these symptoms often indicate sub-optimal results. Again, combining all this information to build a larger context on how the patient is responding to PAP should be sufficient grounds to convince the insurance carrier more advanced steps are needed for optimal management.

This larger context yields a very surprising insight, because the big picture turns out to be more than central apneas. When we try to treat flow limitation events, we objectively see in the sleep lab whether the patient tolerates higher pressures on expiration. When they struggle at this point, they show the objective finding (on the airflow tracing) called expiratory pressure intolerance or EPI. And, from our experience, we see the EPI before we see the central apneas emerging. In other words, EPI appears to be the pathway that leads to central apneas in some patients, and many individuals with OSA/UARS show EPI on CPAP, APAP, BPAP and even on ABPAP. Thus, a clinical and research question should arise on what can treat this pervasive problem of EPI prior to the onset of central apneas. Yet, this problem is only researched by a few groups in the world; and, the most remarkable finding to date is that ASV despite the absence of central apneas, offers a very precise capability to aggressively treat flow limitation while preventing EPI.

This last point has been lost in all the recent concerns and confusion about prescribing ASV in heart patients with severe congestive heart failure. But, even before this cardiac issue emerged on the medical landscape, nearly all sleep doctors presumed that ASV was only relevant to patients with central apneas, based on either of two conditions: primary central sleep apnea or complex sleep apnea.

Our view is based on anecdotal evidence in which we tested individuals with ASV who previously failed CPAP, APAP, BPAP, ABPAP and any possible expiratory pressure relief system such as CFLEX or EPR. All these patients showed EPI but did not meet the requirements for complex sleep apnea. Nonetheless, they were intolerant of all other devices and desperately wanting to treat their sleep breathing disorder. At that point, we recommended a trial of ASV in the sleep lab to determine whether or not it would indeed eliminate the problem of EPI, which resulted in most cases. Afterwards, greater than 70 to 80% of these patients reporting sleeping better with ASV, and several wondered why they could not have been exposed to this PAP mode earlier in their treatment course. Finally, when we appealed to insurance carriers in some cases with explicit details of the problems, some patients received coverage for the ASV device. As a testament to ASV, others who did not receive insurance coverage elected to purchase the device out of pocket.

Wrapping up, let’s return to the second point of discussion, sleep apnea phenotypes. This issue also brings us back to the relatively unsolvable problem of dealing with medical professionals outside the field of sleep medicine. In the setting of primary care clinics, these doctors, nurse practitioners, physician’s assistants, nurses, and various other support personnel often do not organize a cohesive intake system to capture more patients with OSA/UARS. As noted above, there a huge proportion of medical personnel still believe the combo of snoring and sleepiness combo is the only way to punch a patient’s ticket to visit a sleep medical center and receive diagnostic testing. As an aside, some of these doctors are now ordering their own home sleep tests (HST), and once again the same issue arises. Because they are not aware of deep connections between insomnia and OSA/UARS, these physicians are more inclined to not order the HST on the insomniac, but instead prescribe sleeping pills.

This particular phenotype problem is arguably the most frequent way for comorbid OSA/UARS to go undiagnosed among insomnia patients, but there are many more instances where the phenotypic presentation leads astray medical professionals working outside the field of sleep medicine. Some of the most common examples include patients with mental health disorders, especially depression and PTSD, chronic pain patients as well as numerous other medical conditions where the approach is to first rule out various medical disorders before raising suspicions about a serious sleep disorder as the primary culprit in the patient’s symptoms. For all of the above stated reasons, it is easy to see why some patients take up to ten years to receive the correct diagnosis.

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

Last year, Sleep Review Magazine published an introductory story about the SAPCON project, which focuses on collecting input from patients with sleep apnea as a way to “democratize” research and gain valuable insights to promote more effective treatments. Sleep Review published a follow-up story to discuss the preliminary findings, which you can read about here on pages 26-28. 

This article is the fourth in a series, following:

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

Fourth Challenge: Frustration rapidly leads to non-adherence

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

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

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

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

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

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

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

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

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

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

Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 3

Last year, Sleep Review Magazine published an introductory story about the SAPCON project, which focuses on collecting input from patients with sleep apnea as a way to “democratize” research and gain valuable insights to promote more effective treatments. Sleep Review published a follow-up story to discuss the preliminary findings, which you can read about here on pages 26-28. 

This article is a continuation from Part 1 that covered the first challenge: They said I need a machine, that’s it? And Part 2 that covered the second challenge: So I have sleep apnea? So what?

Third Challenge: Are there options besides CPAP?

This section was brief and to the point: CPAP is usually offered as the first and only option. Scant remarks are apparently offered about oral appliance therapy (OAT) or the newer neurostimulation devices. One patient commented it took several years to find out about OAT and only after learning from a friend.

With this small amount of information to go on, we cannot delve too deeply into this topic beyond the obvious point: when confronted with a new medical diagnosis, patients appreciate hearing about all available treatment options. One of the more common scenarios in this regard is a newly diagnosed diabetic patient who wants to hear about diet, exercise, and weight loss strategies in addition to the choices of medications or insulin injections. Moreover, nowadays, a sizeable proportion of patients are likely to conduct their own searches on the use of vitamins, minerals, supplements, and over-the-counter remedies before selecting their pathway.

For OSA/UARS patients, some similarities exist, because weight loss certainly appears to be a reasonable option. Patients may also be motivated to attempt other conservative modalities like changing sleep position (avoiding sleeping on the back), or trying one of the various nasal or throat sprays advertised to decrease snoring. Some OSA/UARS patients, before setting foot in a sleep center, work on their nasal hygiene issues, including the use of nasal dilator strips; and some learn about OAT from a dentist before ever meeting a sleep specialist. Others hear their first recommendations from a nose and throat surgeon, who may discuss repairing a deviated septum, shrinking swollen turbinates inside the nose, cutting out tissues in the back of the throat (soft palate and uvula), or removing tonsils. Other procedures involve shrinking or reducing the size of the tongue, or extreme measures such as breaking and then moving forward the lower jaw (mandible).

While all this information can be provided to any patient, it often amounts to too much information for most people. Moreover, the flawed premise underlying so many choices is the failure for virtually each and every one to measure up to the effects of PAP therapy. In other words, unlike diabetes where a patient could be offered at minimum of 10 different medication approaches with the expectation all or most of them will produce good to excellent results, the various OSA treatment options do not stack up well against PAP therapy, notwithstanding the important caveat that a sizeable number of PAP attempters simply never adapt to or use the device long-term. Thus, the zero effects of not using PAP can always be surpassed by some other treatment that might improve OSA/UARS by 50%, because the patient will in fact use it.

The discussion on who will or who will not use PAP is based on the premise that only 50% of patients actually end up using the device. In contrast, as we recently described in the scientific literature, our center has documented a very high rate of PAP use in patients who filled their original PAP prescriptions, often exceeding 8 out of 10 patients. This high rate translates into a substantially lower number of cases where additional options need to be explored. And, since PAP therapy is the gold standard treatment—assuming the patient can and will use it regularly—we often attempt every possible strategy to help a patient remain motivated to stick with PAP and gain benefits sooner than later.

Our approach to “options,” then, is to tailor these discussions to our assessment of the patient’s initial impressions regarding PAP. For example, anyone who presents to a sleep center, because a friend or family member is reporting excellent results with a PAP device is unlikely to need much information about options, because they are seeking to initiate PAP as soon as feasible. Nowadays, it is very common for patients to present in exactly this fashion, hoping to gain the same benefits as those experienced by a friend or family member on PAP. Even without this catalyst, many people now come to sleep centers “sick and tired of feeling sick and tired” and have done preliminary research about PAP, maybe on other options as well. But, when they hear about the pathophysiology of a sleep breathing disorder and appreciate why PAP works as a gold standard—given that it eliminates sleep-disordered breathing each and every time one uses it—they naturally gravitate to wanting to try out pressurized air. Of course, there are always patients who fear PAP or refuse PAP or otherwise express strong reluctance to proceed with PAP. Even among this more entrenched group, we frequently use the PAP-NAP experience to gradually desensitize them to the entire process. And, among this group who would typically yield close to zero participation in a PAP program, we often see 50% of patients become regular users by having introduced them to pressurized air during the home-simulating experience of the PAP-NAP.

Only after having gone through these phases with the belief adherence to PAP is unlikely, would we then educate the patient on other options. We place special emphasis on OAT or surgical interventions, and rarely encourage weight loss as a preferred option because most people exhibit great difficulties in losing excess pounds. Moreover, the human airway is the primary cause of sleep-disordered breathing; substantial weight loss rarely cures OSA/UARS and surgical intervention has higher success rates.

The bottom line is a majority of OSA/UARS patients need to be on PAP to get the very best response. Providing additional options for patients to consider must take into account that the ensuing results will frequently be sub-standard compared to PAP in a sizeable number of cases. Nevertheless, any patient has a right to consider options aside from PAP for whatever reasons they deem necessary, and we welcome these discussions with all our patients. Time-wise, all our patients have access to information on our website or on a printed brochure about such options, but we encourage nearly all our patients to follow John Lennon’s famous dictum, “all we are saying is give [PAP] a chance!”

Sleep Apnea Patient Centered Outcomes Network (SAPCON): Part 2

Last year, Sleep Review Magazine published an introductory story about the SAPCON project, which focuses on collecting input from patients with sleep apnea as a way to “democratize” research and gain valuable insights to promote more effective treatments.Sleep Review published a follow-up story to discuss the preliminary findings, which you can read about here on pages 26-28. 

This article is a continuation from Part 1 that covered the first challenge: They said I need a machine, that’s it?

Second Challenge: So I have sleep apnea? So what?

The summary provided by the authors outlines how patients may not be properly educated after diagnosis, focusing on three main gaps in understanding:

  • there is a relationship between sleep apnea and other co-occurring health problems,
  • treatment of sleep apnea may prevent or improve these comorbid problems, and
  • treatment may lead to overall health improvements.

Included quotes from patients confirmed they were not aware of the above, in addition to noting the lack of education on the “dangers of non-adherence.”

Two anecdotes showed how enhanced education leads to greater adherence. One patient reported his sleep doctor published a paper on the link between sleep and heart disease, which motivated the patient to use his PAP device whenever and wherever he would sleep. Another patient exclaimed she was never told why sleep apnea needed to be treated, and only when she learned about the connections to early dementia-like symptoms was she motivated to achieve compliance.

Many of the themes above are predicated on fear-based motivation, that is, the belief patients will move forward with treatment and maintain treatment compliance to prevent worse problems. The most motivation in such scenarios often revolves around heart conditions, because patients generally take heart disease more seriously than other illnesses, save the diagnosis of an acutely disabling condition or a terminal illness.

Heart symptoms quickly grab a person’s attention, because you can feel things like chest pain, palpitations or shortness of breath and notice difficulties in trying to exert yourself when suffering various cardiac symptoms such as arrhythmias, heart attacks, congestive heart failure and ischemic chest pain (angina). While not everyone responds the same way, a sizeable proportion of cardiac patients pay close attention to their heart symptoms, seek care for them, and demonstrate some eagerness in wanting to move forward to improve the outlook of their condition. Thus, patients with recent heart attacks or heart failure often show interest in learning about and treating sleep apnea if presented in a balanced fashion.

One caveat relates to the frequent use of supplemental oxygen during cardiac hospitalizations. Regardless of the type of mask (nasal prongs or face mask), a majority of cardiac patients report annoyance with needing to sleep with something on their face, which can evoke unpleasant memories when first confronting PAP therapy. Moreover, many heart patients suffer emotionally distressing experiences during acute cardiac illness (like believing or feeling like they might die), and these unpleasant experiences often arose during labored breathing or shortness of breath. Thus, a PAP mask, headgear, tubes and the machine may not immediately resonate with a cardiac patient, if they had developed a claustrophobic-like response in the hospital environment. A balanced approach may require starting with the unobtrusive nasal pillow masks (even if the patient mouth breathes) to avoid feelings of claustrophobia in a recently “traumatized” heart patient.

Fear-based motivation, however, does not always work in variety of circumstances where the pain and suffering seems improbable and in the distant future. If you informed an OSA/UARS patient “you will be a safer driver and suffer fewer car accidents,” the information is likely to not register in someone who already defines himself as a careful driver and whose had no driving mishaps in the past decade. A similar disconnect might arise in telling someone that treating sleep apnea might decrease the risk of hypertension, but perhaps the patient only currently knows of a family history of high blood pressure and her most recent readings were normal. Thus, specific clinical relevance to the patient is the more likely path for success. Even a minor condition that irritates a patient produces more motivation.

The most common experiences we see with risk-reward scenarios occur in patients who suffer both snoring and nocturia. Which one do you suppose leads to greater motivation to adhere to PAP therapy? The key distinction between these two symptoms is based on the state of consciousness when they occur: you snore while asleep; you get up to visit the bathroom while awake. Therefore, nocturia is the more vexing symptom to the patient; whereas, snoring is more annoying to the bed partner.

The impact of nocturia may go beyond annoying. Suppose you suffer from insomnia; then, nocturia will worsen the problem of unwanted bouts of sleeplessness. In this circumstance of comorbid conditions, the patient recognizes the direct and immediate opportunity to decrease insomnia—a very large reward in the eyes of any insomniac. While the individual may still be in the frame of mind to prevent something—insomnia—the typical insomniac is usually not afraid of insomnia, albeit such fears do arise in more severe cases. Then again, you could argue a patient is motivated by the fear of having a bad night of insomnia after a nocturia event, when confronted by a particular set of important next-day activities. All these aspects may serve to motivate an insomniac suffering from nocturia to adhere to PAP.

As another example, suppose you are elderly or physically disabled and are concerned about the risks of falling and injuring yourself in the middle of the night. Now, there is a real fear each night as navigating safely in the bedroom requires considerable attention. This fear seems more substantial in that falls at night in the elderly are a major cause of broken hips, prolonged recovery and rehabilitation, and directly or indirectly lead to death in the first year after the fall in a significant percentage of cases (ranging from 14 to 58% in different types of patients).

By way of comparison, which set of symptoms, insomnia and nocturia or heart attacks and hypertension, do you suppose would prove more motivating for patients? The answer largely follows the degree of immediacy versus the degree of danger as described in the samples above. Someone highly annoyed by awakenings or trips to the bathroom at night will want to pursue immediate treatment steps; whereas, someone with a recent heart attack or hypertensive crisis may be highly motivated to pursue PAP to prevent deadly consequences.

In clinical practice, it is remarkable how these scenarios play out, especially with individuals who do not report many sleep complaints. In this common scenario, the patient might report very little in the way of medical co-morbidity, not even high blood pressure, but his physician referred him for sleep testing because antidepressants had not worked to improve his daytime energy level or fatigue. Unless the fatigue is fairly severe and the energy level noticeably low, the patient is much more likely to forego any further treatments for OSA/UARS, because he would describe the cure as worse than the disease. Moreover, denial is easy when there isn’t much to deny: if the level of fatigue or low energy does not seem to markedly affect the individual’s lifestyle, the person might respond by declaring he’ll drink one more cup of coffee in the afternoon as the best solution to his energy problem.

Patients with greater sensitivities toward their mental functioning are more likely to be interested in treatment, because they notice decrements in memory and concentration. Others who pay close attention to physical fitness may be motivated by the potential for a renewal of an exercise routine. But, if someone wrote off either of these conditions to aging or simply chose not to complain about cognitive dysfunction or about their lack of physical fitness, why would they pursue treatment for OSA/UARS?

Teasing apart symptoms that patients primarily complain about is usually the most direct pathway to engage them to ramp up PAP therapy use, and this approach often proves more expedient than relying strictly on the general, fear-based education model.