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!”


Barry Krakow MD

Author

Dr Krakow’s 27 years of sleep research have focused on the complex relationship between physiological and psychological sleep disorders. Dr Krakow currently operates private sleep medical center, Maimonides Sleep Arts & Sciences, Ltd., and serves as Classic SleepCare’s paid Medical Director.



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