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CPAP Compliance Below 10%

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Biguglygremlin +0 points · 8 months ago Original Poster Sleep Commentator

I came across a couple of articles that paint an interesting picture when you put them together.

Apparently there are 22 million Americans with apnea

And 80% of apnea sufferers with moderate and severe apnea remain undiagnosed

So only 20% are diagnosed (not sure if this includes very severe)

Sleep Apnea Information

According to the following study of those actually diagnosed with Apnea

31% never commenced therapy

15% abandoned after 10-15months

54% remained compliant after 5 years (closer to 50% see article)

Long Term Compliance

That leaves us with 50% of 20% which is 10%

This would indicate that of the millions of sufferers in the more advanced countries less than 10% (Few countries would match the numbers achieved in America) follow through with seeking treatment, being diagnosed, getting a CPAP machine and making it work for them beyond the first 15 months.

It's worth noting that the original 20% were probably made up of two groups, those that chose to do sleep studies and be diagnosed because their symptoms had become debilitating and they believed they could handle CPAP therapy and those who were under external pressure through work or licensing controls and felt they had no choice.

Despite these motivators 50% of them failed and that is without counting the vast numbers who refused to seek treatment or subject themselves to sleep studies believing it was not necessary or knowing they wouldn't or couldn't deal with CPAP therapy.

I could go into all kinds of justifications for the above generalisations but I believe that the overall picture is clear.

I would normally end with a purpose or a twist but I'm not sure why I posted this other than that the persistent quotes and vagaries of articles to do with compliance seem to always miss the big picture in their convoluted efforts to outdo one another in trivial technicalities.

I read an article this morning that proudly concluded that the compliance rate was between 20% and 80% which I liked because the non-compliance rate would then be between 80% and 20%.

I may be perverse but it appealed to me because I have a real thing for symmetry even though the numbers might have been a tad on the vague side. :)

I guess the bottom line should be:

It ain't easy but you're a rare breed! Hang in there!

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Sierra +0 points · 8 months ago Sleep Innovater

It is not unlike type II diabetes. More people undiagnosed than diagnosed. And if you include those in the Pre-Diabetes category it gets much worse. I think to some degree it is a truce of comfort between doctors, patients, and insurance companies. Many doctors don't really want to deal with it. Most insurance companies don't want to pay for it, and many patients don't really want to know they have it.

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Sherry +0 points · 6 months ago

Good point! Treatment is an inconvenience. You have to be willing to be inconvenienced to be able to feel better. And most people have no idea how much better they could feel. They just don't know what they don't know.

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bonjour +0 points · 8 months ago Sleep Commentator

Sorry Sierra, but you hit a quirk I have, please bear with me. I have Diabetes, type 2. But I was initially diagnosed with Pre-Diabetes. Using the English language I concluded I was before diabetes since "Pre" means before. In this case it does not. Diabetes is a disease where the body does not properly process sugar, and untreated it tends to be progressive. There is another disease that is progressive, Cancer. Pre-Diabetes is similar to Stage 1 Cancer. Would you choose to not treat that cancer knowing that without treatment it would get progressively and significantly worse? Of course not. Pre-Diabetes means you have an early detected form of diabetes that is treatable. I equate Pre-Diabetes to Stage 1 Cancer, in other words, it means that you have diabetes and you need to be treated for it.

Off soapbox Thanks\Fred

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Sherry +0 points · 8 months ago

Great points made on this post with the diabetes comparison. Compliance to CPAP is a huge issue. I was diagnosed in my late 20ies and I am now 57. I struggled with CPAP in the beginning and I still struggle with CPAP. I was not compliant for a good 10-15 years. Then I learned about the dangers of choosing to not to comply. When I was first diagnosed, no one ever told me the dangers of Sleep Apnea. The Doctor just said, you have sleep apnea and gave me a prescription to take to the medical supply to get a CPAP. The only thing I was aware of is that it stopped my snoring. Once I became aware of the all the underlying diseases that could be prevented by being compliant to using my CPAP, I decided that it was worth being inconvenienced to wear the mask. I still struggle every night. I put it on with good intentions only to find it somewhere else when I wake up. I work on it diligently and am always trying new things to be compliant more hours of each night. That being said, I believe the issue is lack of awareness for both Sleep Apnea and Diabetes as to what your life will look like if you choose not to take treatment. Most people are aware what happens if you choose not to take treatment with the C-word. Awareness is going to come through more education to the general public to create the same fear. People are most times more motivated by fear than pleasure. Those with Sleep Apnea could change the statistics if we were more vocal in our own circles of influence bringing it up in conversations and not being afraid to chat about and share the symptoms. Many may recognize themselves inside your story. We must make it a topic of conversation to raise awareness. I will many times refer someone to this site to take the surveys and see if they recognize themselves in working through the questions.

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Biguglygremlin +0 points · 8 months ago Original Poster Sleep Commentator

I can't say I agree with the fear angle Sherry.

I believe there are better ways to motivate people.

Certainly education and knowledge are essential.

I would much rather have the motivation and education and research and propaganda directed towards avoiding CPAP

There should be much more done to educate people about the choices they make every time they open the fridge.

Not as a scaremongering campaign but as a motivational supportive educational campaign.

Fear might work in the short term but it takes understanding and positive motivation to implement long term changes.

Yes I am dreaming but we have taken on massive challenges in the past as a society and achieved phenomenal results.

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Ruby +0 points · 8 months ago Sleep Commentator

I don't understand how you can know the number of undiagnosed. Based on what? No doubt there are lots in that category but just how do they know? Education is the key not only to treat any condition but to help avoid it. I don't care for the fear factor either but for some people that is the only thing that motivates them. Good points, Gremlin.

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Biguglygremlin +0 points · 8 months ago Original Poster Sleep Commentator

I think they call it Empirical Research Ruby, and they use numbers, lots of numbers, big numbers, small numbers all carefully randomised and precisely positioned on their special science cork board.

Then they requisition the very latest and most advanced algorithm generating super precise medically approved XQ Micheal Van Gerwin Pink Demolisher darts. (Along with instructions and colour co-ordinated safety equipment)

It takes them a while to figure out how to get those algorithm generators out of the packet. They usually have to call in outside help at that stage, but once that task is achieved to their satisfaction, and carefully ticked off the check list, and they have adjusted the calibrations, and rebalanced the devices, and calculated velocity and trajectories and such, it takes no time at all, with all due rigor and precise notations, to get the results they need.

Of course there are still some who dare to challenge the validity of the Enhanced Dart Methodology (EDM) and insist on doing it the old fashioned (and much safer) way with surveys and databases and charts and such but they are few and far between.

I hope that helps.

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Biguglygremlin +0 points · 8 months ago Original Poster Sleep Commentator

If you use the PointyDart Software to post a chart here Ruby I could tell you more accurately what the numbers mean. :)

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Ruby +0 points · 8 months ago Sleep Commentator

Well, that does explain it and makes as much sense as anything I've seen or heard. Plus, you made me laugh and that means a lot today.

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Biguglygremlin +0 points · 8 months ago Original Poster Sleep Commentator

If you want a more mundane answer this article has a paragraph entitled Prevalence and a bunch of references to studies around the globe.

The Epidemiology of Adult Obstructive Sleep Apnea

Of course they kind of imply that everybody over the age of 30 who is still breathing is a likely subject for Apnea research which would mean the the real number for CPAP therapy and compliance is way lower than 10%

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KangarooTailStew +0 points · 6 months ago

I didn't know they came in pink.

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SleepDent +0 points · 6 months ago Sleep Commentator

I am a dentist working in dental sleep medicine. I think that one of the main reasons that such a high percentage of sleep apnea sufferers probably remained undiagnosed is that many of the health care professionals who could be making the diagnosis just don't care enough to do it. Dentists are an important case in point. The dentists see the general population far more frequently than family physicians. The majority of dentists have had zero training in dental sleep medicine, especially the older ones. Many dentists who are on PPO plans face tight time constraints and are so busy looking at the bread and butter things on the exam that they have zero time to screen and examine the patients for OSA(if they even know what to look for). And, since most don't actually treat OSA, doing the diagnosis and making a referral certainly won't put any money in their pockets, so there is no economic incentive to do so. Similarly, most family physicians also have little training in sleep medicine and no particular interest in participating in the treatment. And, of course, many potential patients are either still uniformed about sleep apnea or IN DENIAL. Arthur B. Luisi, Jr., D.M.D., The Naples Center For Dental Sleep Medicine.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

I used to think of snoring and apnea as natural processes of aging and the sleep industry as a commercial and largely unnatural industry bent on accruing power based on fear and the misuse of statistics. Unfortunately I still have that view.

I don't consider that I was uninformed then and I don't feel uninformed now so, although this may look like denial, I'm not sure that is the correct word for what I believe to be an informed choice, even when that choice is to ignore something or do nothing.

Five years ago, I had a suppine AHI of 70 and max desat of 77% yet I would have continued to avoid this road if the wife had not been so worried about it.

Yes I was always tired and had been for 25 years so it was sensible to explore any avenue that could address that issue but to be quite frank CPAP has not made any discernible difference to the sleepiness and fog in my case even though I use it 100% of the time.

Some would argue that I'd be dead by now if I didn't have the CPAP but in my twisted reality that would just prove that they are victims of the scaremongering and misinformation mentioned earlier.

Yes I will eventually die of heart disease or diabetes or some such weight and lifestyle related disorder EVEN IF I USE A CPAP unless I lose a lot of weight and improve my lifestyle.

So I guess what I'm trying to figure out is, while the CPAP converts are hard at work espousing the articles of their beliefs, how do they ensure that they have not been indoctrinated with misinformation.

I don't claim to have all of the answers, just endless questions, but it seems to me that oftentimes information and statistics are used to hide the bigger picture. :)

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SleepDent +0 points · 5 months ago Sleep Commentator

One thing that is seldom talked about, maybe because it is too negative, is that, after a certain amount of time untreated, OSA patients may no longer make a full recovery. That is the real incentive to try to get people into treatment early and well. We are well aware of the multiple types of damage that untreated OSA inflicts upon the body. And we know that, with adequate treatment, the body begins to repair itself. Never-the-less, it is not a foregone conclusion that, BAM, a person finally decides to get treatment and then snaps right back to normal again. This is one reason that some people finally see the light, and get treated, and get real health benefits, but never feel really well or rested again. Very sad. Arthur B. Luisi, Jr., D.M.D.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

I know that you are well intended and, presumably, well informed but I would question almost every generalization and implication in that statement and dare to confess that to me it seems to demonstrate how pervasive indoctrination can become within the Sleep Industry and the Apnea community and how effectively it prevents us from seeing the real issues behind the current framework of beliefs.

How can we have such divergent views based on the same sources of information?

Now be nice!

I may even become a convert to this Apnea culture eventually, but it's going to take more than assumptions and generalities for me to make that leap.

Yes I am skeptical but I have noticed that us humans have incredible potential, individually as well as collectively, for both inspired brilliance and profound stupidity, even at the same time. :O

So why is this relevant? Because it follows that all assumptions should be tested against some basic instinct or overview in order to determine their origins and their merits.

A recipe for paranoia? Yes if it goes too far but certainly a valid reason for a healthy level of skepticism.

I stated earlier that I don't have answers, just endless questions, so what's to question about the statement above?

Where do I begin ............... I liked that song! :) Oh well ...... back to the questions.

Why should something that could motivate people to seek therapy be considered negative?

Most OSA sufferers are untreated for years before they begin therapy so how long is a certain time?

Which OSA patients have made a full recovery?

How is a full recovery defined?

What proportion of Apnea sufferers receiving therapy fail to make a full recovery?

What are the multiple types of damage caused by untreated OSA?

Are they actually caused by OSA?

How can we be sure about that?

Are we certain that they cease when therapy begins?

What does the body repair once therapy begins?

In what ways does a patient snap back to normal?

How many patients experience this as a result of OSA treatment?

I'm a long way from Damascus, but I have sought treatment, so what health benefits should I have experienced?

Why should I blame Apnea for all of my problems and not just old age, bad life choices and a universe that is determined to 'get' me?

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SleepDent +0 points · 5 months ago Sleep Commentator

Your questions are overwhelmingly difficult to answer and I wouldn't know where to start, but let me go at this from an entirely different angle. On my job for 13 years, I have come to know many hundreds of sleep apnea suffers both treated and untreated. I have seen the before and afters in real life. In general, the treated versions of the people look better, act better, have more energy, can focus better, and are happier than their former untreated selves. I would rather be one of the afters than one of the befores. Having observed this, I would find it hard to believe that the treatment did not have some value for these people. Arthur B.Luisi, Jr,, D.M.D.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

Oh I do really like that answer SleepDent.

It shows insight and originality.

Thank you! :)

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Francesco +0 points · 5 months ago

Great info and comments. Personally I had to bug my 65 year old GP for a long time before he finally ordered a sleep test for me.

I was diagnosed with severe apnea. When I began therapy I was given a full face mask. I hated it and was on brink of abandoning therapy. Instead I tried a nose pillow mask. I adapted to it quickly.

While I still have "bad nights", and I have complex apnea which is difficult to manage, I no longer nap every day and on most mornings I awaken feeling fresh and alert. For me, it's been a game changer.

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KangarooTailStew +0 points · 4 months ago

A classic success story. Well done.

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