I see patients all the time who are coming in for the first time to see someone for an evaluation of snoring and possible sleep apnea. After I explain what sleep apnea is and order a sleep study, they almost always have a few questions:
- If I have sleep apnea, what are my treatment options?
- You mentioned this mask and treatment called CPAP. How can you expect me to sleep with that mask on my face?
- Can’t we just do surgery and take care of the problem right away?
The answers I give are those that I offer to my own family and friends. For patients with moderate to severe sleep apnea, CPAP remains the first-line therapy. Patients who do well with it love it. I had a close friend visiting me last month who offered to be on any public service announcement I might have because he has had such a dramatic improvement with CPAP and has been able to use it comfortably all night, every night.
On the other hand, multiple studies have shown that about half of all patients with sleep apnea are unable to tolerate positive airway pressure therapy (such as CPAP, BPAP/BiPAP, or APAP/AutoPAP). Most of these have focused on individuals who wore CPAP during at least part of a night and then indicated they would be willing to use it at home. These studies ignore those who find CPAP completely intolerable and refuse it immediately, making the true estimate of difficulties with CPAP a little higher than most studies would suggest.
What happens if you hate CPAP?
A study published in the November 2015 issue of the medical journal Otolaryngology–Head and Neck Surgery examined over 600 patients who were newly diagnosed with obstructive sleep apnea after a sleep study at the Cleveland Clinic over a 2-month period in 2010. Almost 17% of the patients refused CPAP immediately after their initial exposure to it and never obtained the equipment for use at home. Of the patients who did agree to use CPAP, about 60% were still using it at their last follow up (in some cases 3 years after the initial diagnosis), although that still only represents 42% of the total group. For the 58% who did not do well with CPAP after it was recommended, some (about one-fifth) were referred either to a sleep medicine specialist, otolaryngologist–head and neck surgeon, or dentist. However, that meant that almost half (46%) of the entire group of patients newly diagnosed with sleep apnea were unable to tolerate CPAP and did not receive a referral to a specialist to assess their treatment options. Their conclusion was that there are gaps in the management of patients with sleep apnea who fail or refuse CPAP.
Obviously, there is no concerted effort to leave sleep apnea patients without treatment. Some of the patients in this study without CPAP or a documented referral must have seen a specialist at some point in time, even if outside the Cleveland Clinic system. However, some of these patients with referrals probably did not have the chance to evaluate the full spectrum of treatment options. Overall, it is very possible that almost half of all patients with sleep apnea go untreated because they fail or refuse CPAP, and this is the first study to document how common this situation may be.
What does this mean for sleep apnea treatment and sleep apnea surgery?
We know that we in sleep medicine must do better in following up on patients with sleep apnea, regardless of what treatment they undergo. I personally tell all of my patients, even those with fantastic results after sleep apnea surgery, that they should return to see me if any aspect of their sleep apnea returns, whether it is snoring, poor sleep quality and all of the symptoms like sleepiness and fatigue, or health concerns like high blood pressure that is difficult to control with medications. From their initial visit, we also review the full range of treatment options for sleep apnea and discuss whether each is a reasonable approach for them.
Patients share their experiences with sleep apnea surgery, including this one on CBS News
When it comes to sleep apnea surgery, we in the field are making a concerted effort to train surgeons in the wide array of surgical procedures for sleep apnea and how we choose from among them. The recent development of the Upper Airway Stimulation system (shown below) has fostered collaboration between surgeons and sleep medicine physicians that should enhance our work together to maximize outcomes for patients. Of course, the best people that spread the word about the benefits of alternative treatments are our patients. This past week, one of our patients was featured in a CBS News segment about Upper Airway Stimulation and the work we are doing at Keck Medicine of USC. I thanked him for taking the time to share his experience and benefit others.