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

9 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.
Julie on February 11th, 2010 9:41 am

Some people who are use their CPAP but feel worse than they do without may suffer from complex sleep disordered breathing where mixed obstructive & central events are seen during the CPAP titration study. Usually, the obstructive events start resolving w/increasing CPAP pressure then the centrals appear. I believe this was first identified at Mayo Clinic, Rochester, MN. There are advanced BiPAP machines designed to deal w/complex sleep disordered breathing & we have had patients successful w/them. If a patient is not tolerating CPAP, it may be beneficial to see a sleep specialist.
Drew Devlin on July 19th, 2010 5:53 pm

i would have to agree completely with Julie on her post. All to often the patient goes to the Sleep Lab for all the right reasons, diagnosised with OSA, during the titration portion they dont notice that although they have removed the Obstructive component, they have now over pressurized the patient causing what i beleive to be Central apneas.
Although there is no significant data to show that APAP is more beneficial to the patient or does a better job, i do beleive it does make the patient more comfortable, less likely to have have leaks, there by allowing the AHI to increase.
With the newer technologies available, even if a patient uses the unit 100 per cent of the time does not mean they are compliant due to the air leaks.
further follow up and review of the technical portion of the machine needs to be investigated.

I also agree that the BI Level maybe an alternative to these patients that continue to have arousals. the pressure of CPAP is usually only needed to over come the resistance of the obstruction and that during the expiratory phase the patient has an increased arousal due to the difficulties of exhaling against the significant pressure.
the ASV unit has show to be very significant in the treatment of patients with central sleep apnea and should be considered more frequently
Nalani Santiago-Kalmanson, RPSGT on November 29th, 2010 10:43 am

As a patient myself, first, and professional second, I must bring up my own experience with sleep disorder diagnostics. There are approximately 77 named sleep disorders, most of which all have overlapping symptoms. It is far more probable that someone has multiple sleep disorders than not. This could be one reason that CPAP users find little to no relief in their symptoms even at 100% compliance. This was certainly the case for me.

I was diagnosed with Moderate OSA, AHI was 27. Started PAP therapy and had zero relief of symptoms. Since the DME company, or my physician, never followed up with me to see how I was doing… after 2 months suffering on CPAP & losing my job (hence lost insurance), I gave up & stopped using it entirely.

4 years later I had a complete breakdown, released from my job & was told I had some severe Personality Disorders. I knew they were wrong. My new MD was smart & kind enough to listen to me & worked with me to figure it all out. Ends up – I have narcolepsy with cataplexy… and all the signs & symptoms were there at my 1st study 4yrs earlier. Another round of intensive psych testing, after starting treatment for both OSA & narcolepsy, showed no signs of Personality Disorder… I’d simply been extremely sleep deprived.

I tell every patient I set up with CPAP that if they feel little to no improvement while using PAP therapy after nightly use for 1 month – to call me & or their sleep specialist immediately – but do not stop using CPAP until told by their MD to discontinue. I let them know it’s possible to have more than 1 sleep disorder & the only way to test for more – is to know that the 1st one is treated, without doubt. And most importantly, I assure them that I am on their side to help guide them through this process – their friend, coach, cheerleader or drill sergeant – whatever they need to keep up with treatment, and then I stand by that statement. Basically – I am for my patients, what I wished someone had been for me.
Benefits of Sleep Apnea Dental Appliances: The Main Pros and Cons | Apnea Treatment Center on June 16th, 2011 2:08 pm

[...] its popularity and high success rate, though, there are still thousands of sleep apnea patients who remain dissatisfied with CPAP therapy and are happier when their doctors recommend dental appliances for getting relief from apnea [...]
Cat on February 28th, 2012 9:50 am

I have been using the cpap machine for over a year. I’m being forced to use it to keep my job. Being a truck driver I have to have 70% compliance on the cpap or I am not allowed to drive. The difficulty I have is I am exhausted after wearing the mask. I get so tired I have to nap during the day, without my mask, and after that two hours I feel so much better! Drivers that are regulated by DOT standards and diagnosed with sleep apnea must meet the compliance of 70% or will be denied a physical card that is required to drive. I am more of a danger now I’m so tired and more cranky, definite mood changes. After reading this article I’m hopeful I can find something to help me.
Eric Bloniarz on April 24th, 2012 3:27 pm

I have set up hundreds of patients on PAP and currently use Auto Bipap. It took me years to get “compliant”, but I didn’t give up. Maybe it’s because I am in the Home Health Care industry, have access to various supplies and I am a RT. There are many factors that contribute to compliance; patient willingness to accept therapy is first, comfort, and the correct therapy for the patient. Does the patient have complex apnea, what medications is the patient using, what other issues (depression, pain, etc.) is the patient experiencing? Education and follow up are critical. CPAP is tried, proven and safe therapy, but Auto-CPAP, Bipap, Servo Ventilation, Auto-Bipap are alternatives in treating noncompliant CPAP patients. If patients are not “feeling better” from their therapy, did they need it in the first place? I do believe that people that have sleep disorders that are treated with PAP can feel better, but are all the factors being considered? Sure, we can keep your airway open, keep you from desaturating, but if your in pain and having arousals, PAP doesn’t treat that! We need to consider all factors and not just discount the lack of feeling better as the responsibility of PAP therapy.
Wilson L. Hardy on May 15th, 2012 10:01 am

I have been introduced to the world of Sleep Anpea and my employeer is using it to force me out of the company . i’m not sleepy on the job or tired either but the occupational health department of my company is using it to get rid of alot of workers. now , i have taken every test they have asked me to take and my last test they wanted was a MWT(Wakeful of maintenance test) i passed the test and i feel fine after use of cpap machine doesn’t feel any different than before but i’m trying to keep my life in balance due to the pressure of keeping my job. my doctors have approved me for work and occupational health department of my company has denied it everytime. This problem started for me after i found out i had lead poisoning and no one can give me a answer on how lead effects the patterns of sleep ? Why is sleep apnea being use to hurt employee’s instead of help them ?