There were many exciting developments to write about from this year’s annual SLEEP conference in Baltimore. In the weeks and months ahead, I will discuss several SLEEP topics that directly or indirectly relate to the problems inherent in the traditional model of sleep care and the potential benefits from transitioning to the experiential paradigm. There will be other topics covered as well. For these reasons, I will continue with the current series on newer models of care and attempt to arrive at its natural conclusion, because it is increasingly obvious more and more sleep centers and sleep specialists must move in the direction defined by our innovative paradigm. As sleep medicine evolves, it must experiment with and deploy more expedient methods to effectively help patients, and the experiential model stands to become one of the more engaging and comprehensive approaches to address several deficits currently affecting our field.
In Part I, we traversed patient entry through our sleep center’s intake system all the way to the completion of diagnostic testing in the sleep lab. Obviously for some patients, the use of the HST model could apply, but to reiterate our specialization in mental health patients with sleep disorders currently persuades us to stick with in-lab testing for these vulnerable folks, albeit we have no doubt advances in HST monitoring, for example more accurate assessment of UARS and the addition of testing for PLMD, will expand the use of this technology.
Once the Results Coordinator (RC) completes the discussion with the patient, greater than 90% of individuals proceed to the next night in the sleep lab for the titration study. As noted in Part I, due to the intensive training we provide our sleep technologists, often through hands-on, experiential peer-to-peer mentoring in the sleep lab, the patient would next find himself or herself at the most important phase of the process. This first experience with PAP is truly the most clinically relevant and personally informative aspect of our entire model. Even for second opinion patients who had already failed CPAP, this first attempt at retitrations with advanced PAP provides the chance to be brought over the threshold and through a doorway into a far different and tremendously more satisfying experience than previously encountered. You might imagine this viewpoint places a lot of pressure (no pun intended) on the sleep technologists. Not really, because the truth is we could not imagine any other approach, as anywhere from 75 to 95% of patients wake up the next morning reporting their sleep was clearly better than sleeping without PAP. For the second opinion patients, the proportion of cases asserting a positive response to PAP also remains very high, but in these instances the comparison is now between advanced PAP and their prior failing experiences with CPAP.
“Sleeping better” the morning after is one of the most valuable prognostic indicators for future success and a key element in achieving or maintaining momentum for subsequent steps. Most patients are eager to get started with a PAP device. Some are so eager or so greatly in need of the treatment, we will occasionally equip them with a loaner device in the short-term. On average, however, patients are faced with a wide spectrum of follow-up initiatives through their efforts with the DME company they select or as is often the case in the “competitive bidding” era, the DME selected by their insurer.
In many instances how well the DME operates is determined by the relationships between the DME and the insurance company. The DME must send paperwork to the insurer to get a coverage determination on the patient’s PAP device and related supplies. This process can be simple and straightforward with a fair number of private insurers. On the other hand, when dealing with Medicare patients as well as some private insurers, the paperwork can often drag out for weeks on end before the patient acquires the device. The DME is certainly not going to invest in the new device until the insurer has granted coverage. In all these cases the paperwork must be provided by the sleep medical center, but things again can get bog down when every “I” is not dotted and every “T” is not crossed. When dealing with more advanced devices such as BPAP, ABPAP, and ASV, the delays may be even longer if the DME company is not familiar with various ways in which a patient can fail CPAP and thus qualify for a better device.
Our results coordinator (RC) has her hands full in attempting to manage these prescriptions, because there are often minor wrinkles to be ironed out, and the communication snafus often do not promote expeditious management in the process. As you might also imagine, there is frequently a lot of bickering where one organization insists documents were faxed but the other organization can find no record of the alleged fax. Another snafu that surfaces much more frequently than you would expect is that DMEs sometimes have difficulty track down the patients even though the PAP machine is ready to be delivered. As I’ve indicated previously, the DME link is one of the more problematic areas of sleep medicine care, which is why I have so much more trust in Classic SleepCare as they only deal in sleep apnea related equipment, and they are heavily invested in a strong, patient-centric infrastructure. Otherwise, par for the course are the frequent back and forth exchanges with DMEs trying to get all the paperwork completed and the patient finally setup with the device.
Usually, in our model, the morning after discussion with the sleep tech combined with the RC discussion typically held the next day are sufficient for 80% or more of patients to move forward. The other 20% require additional services, clinic appointments, new testing, discussions, or just ordinary delays due to the human condition such as intercurrent illnesses, finances, and family matters. The beauty of this system is that from start (completion of intake) to finish (initiating PAP) most patients have their PAP machine at home and ready to use within one month. Obviously for the other 20%, the delays could be additional weeks or months and in rare cases a year or more when dealing with a patient who is not even close to committing to long-term PAP use.
The next phase of our model and arguably the most difficult from the patient’s perspective is the protracted adaptation process that affects so many individuals. Here again, we are fortunate in the implementation of advanced PAP therapy, because so many of our patients don’t just declare “better sleep” during the lab night, they also receive their device a couple weeks later and report sleeping better very early in the process. Nonetheless, the trials and tribulations of dealing with mask leaks, mouth breathing, nasal congestion, pressure adjustments, mask fitting, skin irritation, aerophagia and host of other nuisances absolutely become deal-breakers in many patients who are not rapidly attended to. As you probably know, these issues are virtually all allegedly dealt with in the domain of the DME companies, but among our local suppliers we find several weaknesses in the delivery of this care. I don’t want to belabor this point, but I must insist on the well-known facts that sleep technologists spend typically 2000 hours per year in direct patient management and have learned to deal with virtually all these hassle factors with precise steps and adjustments. Unfortunately, many DMEs today still only employ respiratory therapists who have never worked a night in a sleep lab. I believe this problem remains one of the major obstacles to higher quality of care in the DME environment.
In our system, multiple pathways are available for patients to interact with our center. The three most direct pathways include emailing with our staff, phoning in to our staff, and creating a troubleshooting ticket on our website. Our troubleshooting system also has several distinctions, for example a patient might ticket an equipment issue, a prescription needed, a complaint, or a request for a certain type of appointment. The messaging system also permits the patient to describe the ticket as urgent or solvable in 1 to 2 days or within a week.
Several backup systems include the 24 hour telephone line in the sleep lab, which means someone can call and leave a message any time, and the call will almost always be returned within 4 hours if it wasn’t answered at the time of the call. The most difficult patients receive my cell phone in the early weeks of their care, so they can text with me or occasionally talk through obstacles. Many of these 5 to 10-minute talks help patients regain their momentum, but more importantly, all these pathways are designed to look for very specific targets to address. The question that always arises for nearly all patients is whether the solution requires hands-on at our center or the DME or both, telephone instructions, adjustments in medications prescribed by me, or solving insurance snafus as they relate to patients obtaining the right supplies.
Where we have seen the most valuable services are in the one-on-one sleep technologist encounters that we call Patient or PAP Management appointments (PMA), which we bill through the CPT code 94660. These appointments are directly supervised by me, but only about 25% require my intervention during the actual appointment; whereas, certain insurer policies require sleep tech/doctor combination appointments to provide the face-to-face encounters. Although I can be very helpful in the tech/doctor appointments in solving more intricate issues such as when to consider a retitration, how to adjust leg jerk medications, and when to more aggressively treat complex nasal congestion issues, we know our patients absolutely adore our sleep techs and love the time they get to spend working through very specific mask issues as well as the accompanying mouth breathing, chinstrap, mouth taping, and aerophagia complaints. Although these appointments cannot resolve every nuisance factor, it is very clear such efforts build patient confidence in ways that pay off in the home environment.
In this follow-up phase of care, we have multiple players involved in staffing assignments. We use a main follow-up coordinator, and we use a web-based Detailed Tracking system, where every daytime encounter, be it phone, email, in-person clinic or PMA, walk-ins, or text messages gets tracked by time and content. Depending upon the immediate resolution versus the necessity for future follow-up, staff will enter a tracking date for future correspondence or communication with the patient. For example, a patient starts leg jerk medication, and we want to know the response 2 to 4 weeks later; or a patient tries a new chinstrap for mouth breathing, and we want to know the response a week later; or, the patient has been struggling with several factors and knows a retitration is necessary but wants to be contacted for scheduling two months later.
Every daytime staff person, including myself, receptionist, new patient coordinator, results coordinator and various day time techs who may be working on clinic or research activities lend a hand to follow the Detailed Tracking system. To be clear, each day, a new set of tracked patients shows up on the date previously inserted during the last entry in the system. There may be as few as 3 established patients emerging or as many as 20 established patients showing up on the tracking system on any given day. In the course of a week, there are usually 30 to 70 patient follow-ups noted. Most of these follow-ups are not urgent, but this system has populated them into our awareness list, so we know to make contact within the next few days or next few weeks. As you might imagine again, there are frequent delays when we are unable to make the contact with the patient or the patient is less interested in returning our calls or emails.
Summing up, many patients receive maximal care in the early going, and the result is a very happy sleeper who is responding well to PAP and is already in the stages of what we call fine-tuning. However, a proportion of cases are those with the greatest sensitivities and therefore the most complaints. These patients will always require more time and care and for whom we devised protocols such as the PAP-NAP and REPAP. Suffice to say, as you know from past blogs, returning difficult or problematic patients to the lab is often the most cost-effective way to get them over the hump.
The questions going forward revolve around whether or not this experiential or mixed-model of care is better than the traditional model. Obviously, a true test of superiority would require a large sample of patients treated at numerous centers, for example hypothetically 1000 patients at each of 20 centers, where 10 centers practice traditionally and 10 practice experientially. Such an exercise or experiment is not likely to occur anytime soon for the simple reason that so many medical professionals are wedded to the traditional model. One would need to find special funding from an organization that could provide millions of dollars to rigorously test the differences in the models.
Thus, as with many things in medicine we are left with some degree of frustration, because so much of what we have described resonates well with common sense, yet surely there are cracks in this new model, and traditionally-oriented practitioners might find may ways to poke holes in the argument of “test first, and answer questions later.”
In my opinion, I think it is fair and right to say that the jury is out with no definitive verdict in sight regarding our innovative model, because of the lack of evidence described above. But, anecdotally, I will point to our interesting experiences with second opinion patients. All of them as far as we can tell come to us from traditional models of care where the patient is first seen by the medical professional and then proceeds through testing. As mentioned at the outset of the series in Part I, we have observed a tremendous amount of knowledge apparently not effectively transferred to these patients via their travels through the traditional care model. Take the problem of trips to the bathroom at night (nocturia) as a prime example of how this information should be incorporated into a traditional model and how we use it in our experiential model.
We cannot speak to the omission in the traditional model as we would have presumed it would be standard of care to discuss nocturia with potential OSA/UARS patients. In our model, this issue is front in center in four different ways. First, the nocturia questions on our intake are listed under a survey titled, “Sleep-Disordered Breathing-30” where we ask 30 questions about various symptoms. Among some of the most relevant are issues about cognitive impairment, dry mouth upon awakening and morning headaches. Nocturia is the only two-part question, and it is the very last questions on the SDB-30. It reads: “The need to use the bathroom to urinate at night,” to which the patient is asked to rate frequency, “Never, Sometimes, Often, or Always” and the intensity, “None, Mild, Moderate, or Severe.” Next, they respond with a number for the last part, “On average, how many times do you wake up at night to use the bathroom to urinate?” Notice the questions are neutral by not asking the patients whether the nocturia itself awakened them. It simply asks for the data on this symptom. As most patients are somewhat curious, we purposely put this symptom at the end, hoping to pique their interest in “why is there a question about trips to the bathroom on this sleep breathing symptoms survey?”
Second, when the new patient care coordinator or myself is talking with the patient by phone prior to or during sleep study scheduling, we always look at this question to note whether it is a relevant topic for the patient and particularly so if the patient indicates any degree of reluctance about moving forward. The action usually starts with a question like, “do you know about the connection between sleep apnea and trips to the bathroom?” Most patients want to hear more, so in some instances, the conversation delves immediately into the details, or we simply show them a video.
Then, the third occurrence arises at the sleep study, where again depending upon patient reluctance or motivation, the sleep technologist will return to this symptom and ask if the patient has watched the video or start again, by asking “do you know about the connection between sleep apnea and trips to the bathroom?” Again, when the patient has now heard for the third time nocturia might improve with treatment of OSA/UARS, we notice these patients are on the verge of remembering the connection.
The last bit of knowledge transfer occurs after I have completed the final interpretation and recommendations of the sleep study report. When the RC discusses these findings and action steps with the patient, the question and information may again arise if we feel a patient is lacking motivation.
We are not suggesting that every single patient receives all these instructions, but we are saying that we are very much on the lookout for individuals who suffer from the combination of nocturia and poor motivation about treating OSA/UARS in general or using PAP. And, I think it is fair to say that we dispense a lot of knowledge upstream (no pun intended) before it would have been delivered in a traditional care model, because the new patient intake coordinator spots the relevant patient and sends the educational video. Thus, before the patient would ever step into our environment, regardless of whatever might constitute the first step in our center, he or she would have learned about one of the most crucial motivating pieces of knowledge you can use in the education of a sleep apnea patient. Then downstream in their interactions with the sleep technologist and the Results Coordinator, the information is reinforced. And, in the truly treatment-resistant patient, a fifth encounter occurs either when I also call the patient following the sleep study or I meet with the patient in clinic and ask them to watch the 5 minute video at that time if they had not done so already.
In my personal and professional experience, this model of care appears highly effective because it meets the criteria of “personally-tailored medical practice,” which should be the basis of any “patient-centric model.” Indeed, when a physician or other healthcare professional finds a symptom highly relevant to the patient’s desire to seek treatment and the ensuing explanation reveals how the disease causes the symptom, then a patient will usually act on new knowledge if he or she believes the therapy would resolve the problem.
Of course, in the traditional model of care, one could easily discuss nocturia, show the video and described the benefits, but our concern is with an approach that lacks an experiential connection to nocturia. In other words, how easily does the patient use all this speculation to connect the dots? In our model, they have undergone the sleep study first, confirmed the diagnosis or reconfirmed the diagnosis in the 2nd opinion patient, thus eliminating a lot of speculation. Staff to patient: “As we have shown on the computer, you have a sleep disorder called sleep apnea, known to cause nocturia; if you treat sleep apnea, nocturia would decrease. How would you like to proceed?” The above questions can be asked by the sleep technologist, the Results Coordinator or myself at any point, and at every juncture the patient already knows OSA/UARS is the decisive factor to be reckoned with.
In the future, we will look back on several flaws in the traditional medical model of care. Robots no less will lead the way in some fashion by a capability for gathering a great deal of subjective and objective data that will permit more instantaneous evaluation and treatment. Such models of care would be the ultimate mixture, combining traditional and experiential approaches and will likely prove far superior because of a capacity for more rapid, accurate results and more rapid, effective interventions.