Sleep Apnea CPAP Compliance Craziness

November 10, 2009

One of my biggest pet peeves is how doctors use the word compliance. If a patient doesn’t comply, it usually implies it was the patient’s fault. In sleep medicine, compliance is often used to measure how well patients use their CPAP machines. But compliance is not the same thing as success.

Various studies report CPAP compliance rates at 29% to 83%. The problem is that the definition of compliance changes from study to study. More recently, we’ve adopted the new Medicare requirement for CPAP compliance, which requires that the patients use CPAP at least 70% of the time over a 30 day period, for at least 4 hours every night. Otherwise, the machine has to be returned.

If you sleep 7 hours every night, it comes to 210 total number of hours per 30 days that you’re sleeping. Seventy percent of 210 hours is 147 hours. If you sleep only 4 hours every night, then this figure drops to 88 hours, which means that you have to use your CPAP machine only 40% of the total time that you’re sleeping to be considered "compliant." This doesn’t take into consideration if you’re actually feeling better or if the machine is being used effectively.

Since CPAP works only if you’re using it, if only 40% of people are still using CPAP regularly 5 years after beginning treatment, then the CPAP success rate is at best 40%. But not all people who use CPAP will benefit, so this figure is likely to be much lower. Many more people are likely to stop using CPAP as the years go by.

There are many patients that are 100% compliant with CPAP, using their machines 100% of the time they are sleeping, with no leaks and a low AHI, and still feel no better. Sometimes they can even feel worse than when they don’t use CPAP.

From what I’ve seen with CPAP compliance studies or even with sleep apnea surgery studies, they all manipulate the numbers to make their results look great. In very tightly controlled research studies with frequent follow-up and intensive intervention, results are likely to be good. But in the real world, with fragmentation of care, poor follow-up and lack of patient education, true success (the patient feels much better AND the numbers show it) is disappointingly low, no matter which option you choose.

Despite all these obstacles, there are proven ways to improve CPAP success. With a systematic and formalized education program, along with intense counseling, follow-up, and long-term support, many more people can benefit from CPAP. Ultimately, a major part of poor CPAP compliance is due to the health care system that’s dropping the ball.

Am I being realistic or too pessimistic? Let me know what you think of this issue in the comments box below.

Written by Steven Park · Filed Under Blog, CPAP, obstructive sleep apnea
Tagged: ,compliance, CPAP, sleep apnea

2 Responses to “Sleep Apnea CPAP Compliance Craziness”

Sara on November 11th, 2009 2:34 am

This response relates to CPAP treatment for UARS…

CPAP treatment puzzles me on many levels. I “failed” at CPAP despite working up to a compliance level that thrilled my practitioner. The failure was due to the fact that I never felt better with CPAP use; in fact, I felt worse. I felt like my sleep was more interrupted by the machine, leaks, having something on my face (I am a bit claustrophobic), being “forced” to sleep on my back, getting “rained” on, etc. Eventually, I was avoiding going to bed either because I hated using the machine so much, or because I felt guilty if I did not sleep with it. I know I sound whiny, but I am not a whiny person. I am a health care provider, and typically, I am a compliant patient with a high level of tolerance and adaptability. I was exhausted after years of sleep disruption, so I was highly motivated to do something to feel better. Andy yet, I was feeling worse, so what was the motivation to use the CPAP, and is it really working if that is the case? I did have decent CPAP support when I sought it out, but that did not change the fact that I never saw any improvement. Since the CPAP treatment failed, my diagnosis was altered to include a secondary diagnosis of idiopathic hypersomnia. I was put on Provigil which made me feel great at first, and then the panic attacks set in (and as I reminded my practitioner, the Provigil was just a mask, as my body was still getting beat up by my sleep disordered breathing).

As a result of “failing” the CPAP, I switched to a mandibular advancement device. I noted significant improvement from day one, as it allowed my tongue to clear my airway. It has changed my life. I won’t go to bed without it, resulting in 100% compliance.

So, was CPAP the proper treatment? I was always puzzled that the CPAP treatment encouraged sleeping in supine due to the nature of having so much stuff on the face, putting me in the position that theoretically requires more intervention from the machine due to tongue collapse? I was already arousing 29 times an hour all night long and now I am supposed to sleep with this mask and hose and forced air on my claustrophobic face? It really does not make sense to me. I lost another 9 months with the CPAP. My husband has been struggling with the CPAP for 5 months with the same results; his MAD is bogged down in insurance denials/appeals.

I have followed the blogs on SleepGuide, and I am pained by the number of people who diligently comply with significant effort and report that it took many months to feel better or still do not appreciate much improvement. And yet they battle on.

If CPAP does not result in a patient feeling better, is it really doing the job? How long is it appropriate for a patient to use the CPAP if they are not feeling better? I was my own advocate for pursuing the MAD; none of my sleep practitioners encouraged it (an ENT did). I had become armed with knowledge through your book, Sleep Interrupted. My heart aches for those patients who don’t know the ins and outs of the healthcare world and are unable to advocate effectively for themselves (mostly because they are so exhausted and vulnerable).

I would love to see a study that evaluates those who benefit from the MAD versus CPAP and those who benefit from CPAP versus the MAD.

I agree 100% that education and good support would be critical in facilitating compliance. CPAP is not a simple thing.
Steven Park on November 11th, 2009 4:15 am

Sara,

Thanks for your thoughtful comments. You’re absolutely right. At what point do you give up on CPAP and go on to other options? It’s clear from your story and many others I’ve seen that for some people, CPAP just doesn’t work, no matter how long you use it, even with 100% compliance. I’ve have patients with compliance data reporting optimal usage, with no leaks and a minimal AHI, and patients still don’t feel better. Some go on to dental devices and do well, and some don’t. Others try everything and only surgery is able to help them sleep better.

You do hear about patients struggling with CPAP for 6 to 12 months and finally feeling better, but that’s rare. The vast majority just give up and get lost to follow-up. It sounds like you exhausted all your CPAP options and made the appropriate choice.

My theory about why CPAP doesn’t help in some people is that the CPAP itself causes more arousals. In general, people with mild obstructive sleep apnea or upper airway resistance syndrome have hyperarousable nervous systems.

I’m so glad that you didn’t give up and took the initiative to go for the oral appliance. It just goes to show that with sleep apnea, there’s no one best treatment choice. You won’t know until you try different options.