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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.