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Last year, Sleep Review Magazine published in 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. Just last month, Sleep Review published a follow-up story to discuss some of the preliminary findings, which you can read about here on pages 26-28.

The article, which was written by three leaders of the project, reported initial information gathered through the www.MyApnea.org forum (the location of the SAPCON project), where patients described, “significant gaps in the care and information they receive from sleep medicine professionals.” With this background material, they sought additional feedback from users of the website via an extensive list of interesting SAPCON surveys that inquired about what patients see as information gaps, what they are missing from their clinicians, and their suggestions for best practices. The article then goes on to list a set of challenges and potential solutions for a professional audience. In the following posts, we’ll discuss each of the challenges and the solutions offered as well as how our sleep center, Maimonides Sleep Arts & Sciences, Ltd might offer additional or different approaches.

First Challenge: They said I need a machine, that’s it?

The essence of this complaint is the failure of healthcare providers to fully educate patients so they have a clear understanding of what it means to be diagnosed with sleep apnea. Patients are often unable to digest information about apneas or hypopneas (and no mention is made here of UARS, RERAs, or flow limitations). The main insight is that patients often find the learning process overwhelming due to different learning abilities and preferences. Additionally, sleep doctors are not taking enough time to educate their patients, or they lack specific plans or information sheets to spell out the process for patients to follow over time.

What surprised me most about this challenge point was the absence of any mention of underlying cognitive impairment in these patients due to their OSA-induced sleep deprivation or fragmentation. This impairment reflects our default position in dealing with every patient with a sleep disorder, because we know we must use great precision to tailor our educational and coaching pathways to effectively engage them. What I learned about this process in the 1990s was quite a surprise, because I had always assumed talking with a patient before a sleep study (the traditional approach to care) would prove a successful model of care. It never occurred to me most patients actually forget sizeable chunks of information following these appointments, especially when I was working at an institution where the patients could not be tested for a month or longer following the appointment. Although my research on this process point fits into the category of “straw poll,” it nevertheless was provided to me by a slew of sleep technologists who confirmed with me that most patients were not remembering much from their initial intake encounter.

When we opened our sleep center in 2003, we immediately moved in the direction of “shoot first, ask questions later.” The model comprised an extensive on-line intake system, which after completion by a patient led to phone discussions with my staff or me to clarify how to proceed. Because of the uncertainty on how patients might respond to the uniqueness of the system, a strategically placed question at the end of the Sleep Medicine History component of the intake offered the patient a choice of starting in clinic versus starting in the lab. At the inception of our program, I was stunned that greater than 80% of our patients opted for the sleep lab. As of today, greater than 95% of patients choose the sleep lab over a clinic appointment to start their sleep treatment program.

As you can see below, the wording is geared toward encouraging patients to attempt the sleep lab first, yet provides enough mentions of clinic appointments so that a patient would feel comfortable requesting one. If uncertain, this issue can be addressed over the phone to determine how to proceed. Occasionally patients who want a sleep lab test are persuaded to instead start with clinic and vice versa.

Visits to Dr. Krakow’s sleep medical center include clinic appointments and sleep lab tests. Although you may schedule clinic visits as you need, Dr. Krakow advises starting in the lab. Sleep tests not only clarify the nature of sleep problems much faster, but they also speed up your treatment program. In some instances, a patient benefits by starting in the clinic. If you are unsure about how to schedule, our staff will help you decide. (The patient checks the box by one of these two options.)

     I would be comfortable following your recommendations for scheduling.

     I would prefer starting with a clinic appointment to discuss my sleep problem

This lab-oriented system, however, served a much greater objective in attacking the cognitive impairment head-on through picture-focused education the morning after the sleep study. We recognized “strike while the iron is hot” as an essential ingredient to enhancing patient education and motivation. Thus, we created the following system:

  • Upon completion of the sleep study (diagnostic or titration), the patient sits down with the sleep technologist that morning for anywhere from 15 to 60 minutes to review images on the computer showing breathing events, leg jerks, arousal activity and so on and to discuss the importance of treating sleep-disordered breathing. Of course, the sleep technologist cannot make a diagnosis, but these preliminary visual impressions have proven very memorable to our patients and, in turn, informative and motivating.
  • Each sleep study report is generally finalized within 24 hours of testing, and greater than 90% are done the same morning, shortly after the procedure is concluded.
  • Our Results Coordinator (RC), using HIPAA-compliant, encrypted emails, sends the final report with my interpretations and recommendations to the patient (some patients walk-in for the report or have it faxed or mailed to them).
  • That same day, the RC phones the patient to discuss results and answer certain questions. In many instances, patients are so motivated by the process, they choose to go forward with a titration test as their next step or to request immediate set-up with PAP therapy.
  • If or when a patient expresses concerns, confusion, resistance, or impairment or any other potential barrier, the case is turned over to the Clinical Manager (a licensed, registered sleep technologist), after which the patient will be scheduled for either a clinic appointment or a phone call with me to determine the next best steps.

We also recently published our Patient Process brochure, detailing in 16 pages and largely with graphics, the sequence of steps from “ABCs to ZZZs.” The pamphlet is especially relevant for those patients who need frequent reminders about the process they are undergoing and for those who just want a one-time overview of how things likely unfold. The brochure, which will soon be available on our website (www.sleeptreatment.com) for easier access, spends the first six pages with simple flow charts to show the progression through our sleep center operations. Next, two pages discuss the role of DME companies and how resupply of equipment occurs. The second half of the brochure describes how to assess whether or not you are gaining an optimal response to PAP therapy, the role of retitrations in the sleep lab to achieve optimal results, how to take advantage of various types of follow-up appointments, alternative OSA/UARS treatments, a brief bio on my work in sleep medicine and an extensive glossary of sleep medical terminology, described in lay words. From a convenience standpoint, when patients open the brochure the left-hand page shows a broad overview flow chart of several key sleep treatment pathways, and the right-hand page shows every direct phone number for any administrative, clinical, or laboratory service.

Undoubtedly, aspects of our system might lead to a patient falling through the cracks, which regrettably occurs in every medical clinic setting, be it traditional or non-traditional. Nonetheless, we are very proactive in reminding patients we are just a phone call or email away, and we have been operating a web-based “ticketing system” to address patient needs for non-urgent issues. Finally, in the past year we instituted a no-appointment, walk-in system to rapidly review objective data downloads and measure changes in outcomes (e.g. sleepiness, insomnia, and nocturia) in order to evaluate progress or lack thereof in various types of individuals who may need more regular contact with our staff.

Summing up, the SAPCON project is a fantastic concept, which has the potential to be a real game changer by discovering flaws in the current practice models of sleep medical care. Like any information gathering system, whether more broad-based like SAPCON or narrowly tailored like a targeted research protocol, the output developed from the efforts is greatly influenced by the initial input, namely, the relevancy of the questions will greatly impact the relevancy of the answers received. As we continue to explore the other Challenges posed in the Sleep Review article and the preliminary solutions, we will take the opportunity to attempt to predict whether or not they are asking all the right questions, an objective rarely achieved in this type of project or even a research protocol. And, we will continue our discussion on how our sleep center operations may tackle these problems in different ways. We trust some of our commentary will be informative for the SAPCON group and other sleep medical center professionals.

Last, to be clear and fair, the SAPCON authors and their team who have put this grand, highly commendable scheme into actual practice can only report so much information in a brief report such as the Sleep Review article; in this context, then, they deserve the benefit of doubt when a piece of information may not appear in their comments due to these gross space limitations. Thus, any point made in my posts that might be read as a criticism or an omission regarding their work has no such intent. Rather, I would hope these posts will be viewed as informative and speculative commentary.

In the next post, we will look at the Second Challenge: So I have sleep apnea? So what?