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Do we know how many people don't/can't continue CPAP?
#1
Do we know how many people don't/can't continue CPAP?
I'm one of the lucky one who was comfortable with the mask right away and started feeling the benefits soon after starting CPAP. I wonder if there is evidence of how many people stop CPAP because they can't tolerate the mask, or for other reasons. 

It's a shame that people don't get more support "after sale" to help new users until they are comfortable. But good for anyone who finds this website, because this is a great place to learn how to use CPAP.
Kathi D.
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#2
RE: Do we know how many people don't/can't continue CPAP?
I can't imagine any of the data being reliable, especially from a "don't" vs "can't" point of view.

I am a very motivated patient, and a passionate self-advocate. But I would have completely failed out of CPAP therapy if it hadn't been for this board. My dr was ready to leave me out to dry; in fact he did, but I found this forum and commandeered my therapy and turned my quality-of-life around.

So... I would have been both a "didn't" and a "can't", had it not been for this board.
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#3
RE: Do we know how many people don't/can't continue CPAP?
I believe that the figure may be as high as 50% after a six month period (based on research) and we would all know why.

As we know, adapting to xPAP is not an easy process and requires a lot of support and experimentation. This is certainly not the case here in Australia where OSA is a big added extra to any health insurance policy and I imagine the dropout rate, because of the very limited support, would be close to this figure. Only a small percentage of Australians (the unlucky ones?) have any compliance constraints. These would basically include long distance drivers and those whose GP dobbed them in to the state department of health. There is no financial relief for those with compliance orders.

As you drive through Australia's Outback on those long and straight roads there are numerous signs warning about driver fatigue. Rest every two hours or take a power nap is what they say and this is the sole government intervention for this issue. We don't know how many single vehicle fatalities where the driver simply went off a perfectly straight road were due to OSA. There has been no major study on what causes driver fatigue. It's simply accepted that if you drive for a certain amount of time then crippling fatigue is inevitable. I would strongly dispute that fact for healthy drivers based on my own experiences.

So, how many diagnosed OSA sufferers are out there on my roads who couldn't handle the therapy and gave up? More importantly, how many undiagnosed drivers are out there? I was on the point of giving it away and then discovered this forum for which I am eternally thankful.
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#4
RE: Do we know how many people don't/can't continue CPAP?
(11-20-2019, 10:07 PM)kderevan Wrote: I wonder if there is evidence of how many people stop CPAP because they can't tolerate the mask, or for other reasons. 

The medical profession calls this compliance and they recognize that it's the largest obstacle to treating the affliction of sleep apnea. CPAP therapy itself is a miracle treatment in that it works better than just about any other medical intervention for any other medical affliction. But it doesn't work if the CPAP machine is stored in the closet.

I don't know the numbers.
Sleepster
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Do we know how many people don't/can't continue CPAP?
Ahh come on Sleepster, I NEVER stored it in the closet. I kept it on top of my dresser, that way I'd remember to set it up. (been there since 1823 and i'm still fine) Look, a humidifier in the room helps me, the air conditioner too, even the space heater, why doesn't a CPAP work in the room. Besides I've never worn a TV either and they all work.

All jokes aside, it is the biggest issue with apnea that is out there. That's why a lot of people as about implants such as inspire, and impossible engineering such as air-ring. They don't want that alien on their face.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

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#6
RE: Do we know how many people don't/can't continue CPAP?
I'll propose another thought. It is the sleep "profession" itself in the U.S. that causes a high level of failure. Prevailing attitudes with too many doctors is that patients must follow their fixed pressure prescriptions based on a few minutes of a sleep study in which we ignore any issue other than obstructive sleep apnea. A lack of followup, or any focus on comfort and poor efficacy that results from sleep-onset central apnea, and even significant obstructive issues related to upper airway resistance, flow limitation and consequent RERA. All of this reinforced by an insurance system that recognizes AHI as the ONLY important metric, and requires that all apnea be treated equally, starting with CPAP, regardless of the medical indications.

A failure rate of 50% approximates the number of people that are either misdiagnosed, mis-treated or experience comfort issues that might be resolved with an honest medical approach that focuses on problem solving. Therapy failure is blamed on the patient, and is designed to transfer as much cost onto the patient as possible. In no other illness would this be acceptable, and doses would be altered, and different approaches tried. With sleep apnea, if you fail, you are removed from coverage and your equipment repossessed. So here we are at Apnea Board back-filling that void.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Do we know how many people don't/can't continue CPAP?
I'd have been a "can't do this/won't do this" xPAP failure if not for Apnea Board members. When I joined in 2017, I was in the midst of failing BPAP therapy, which happened anyway. I needed to fail that because I've needed an ASV to combat central apnea. Beyond that, I've got some pretty complicated, rarer needs than most others. I have pre-existing central apnea and COPD. I'm in a rare class called Overlap Syndrome. I'm currently using a ResMed ASV that does very well in treating me, if my COPD and other illnesses cooperate.

As for numbers of who fails and why? My guess is higher than 60% that are diagnosed as having any form of Apnea (and in any severity level) are going to fail, likely by way of quitting. The big reason? Doctors, DME's, and RT's aren't trained or informed, or too stubborn to go outside their preconceived box of apnea treatment and therefore cannot train and inform the patient. They try to cookie cutter treatment by "this is THE answer and there's no other answer". The ones who should support the patient fail to do so, and then the patient fails as well.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Do we know how many people don't/can't continue CPAP?
Well said, Sleeprider, and I agree.  I have opined several times in other threads that Apnea generically is a very complex problem, and so is its cure.  Both are well beyond the ability of many people to grapple with its complexities constructively, even if they are well motivated.  Many prevail, many fail. In too many cases, it's no thanks either way to their health care providers.

And that's where the Sleep Brigade comes charging over the hill.   Big Grin Thumbs-up-2 Way-to-happy
Serial Tapist
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#9
RE: Do we know how many people don't/can't continue CPAP?
Thanks for the thoughtful replies. I didn't find this board until I had been diagnosed and received my Resmed machine, which was not auto-adjustable. After several weeks of use, during which I learned so much here, I tried to trade for an auto-adjustable machine, because although I was being 100% compliant, I couldn't get my AHI rate below 6-8. The supplier had "given" me the first machine, noting it was "the best" and I had zero knowledge to disagree.

It took several conversations with the supplier to convince him to replace my machine with an autoset, and I must confess that the only thing that finally moved him to action was my tearful near-breakdown phone call with him. He advised me to come and trade for the new machine, and also said that he could no longer support my treatment in any way. I was "dropped" which was funny, because there had been zero support anyway.

I wasn't sad when he went out of business a couple of years later. So glad I found this group, otherwise I wouldn't have had the tools to demand what I needed.
Kathi D.
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#10
RE: Do we know how many people don't/can't continue CPAP?
My fiancee (now wife) was a failed CPAP user, despite being a nurse, and despite her mother's lung damage, apparently from decades of untreated apnea. I had not failed because I refused to start for a long time. As a widower dating again at 48 (7 years ago), I was not anxious to use something like my father had in the early days of CPAP (so yes, I knew better too).

Kim told me this summer that it was time. Once I accepted that, I was very motivated and determined to make it work. Luckily, the combination of abysmal insurance and an HSA account allowed me some freedom to experiment. Three decades of R&D experience helped, as did the many helpful people here. I spent a lot of time during the day figuring out what would work at night.

In return, I told Kim that it was time to drag her machine out of the closet. Supposedly her diagnosis was UARS, not apnea, so the machine "really didn't help anyway". Well, I looked at her old data, and saw significant flow limitation AND apnea (consistent with my own observations). Her "treated" AHI was averaging around 14 with her settings from sleep lab titration. She also mentioned that she had tried the machine again not long ago, and had severe trouble with aerophagia. OK, there was really no way to handle all of those issues together with her old PRS1, so I gave her my Resmed For Her, worked through some mask issues, and started working on getting her comfortable. She's now consistently in the 2-4 range, and sleeping through the night without removing the mask. We still need to bring her minimum pressure up some, but that is going to take several more weeks (at least) of slowly nudging it up, giving her a chance to get used to it, rinse, lather, repeat.

We joke that I'm her home sleep tech, but really, I don't see how Kim could have ever been successful with the usual/official process. Oh, and I can be reliably 0.3 or less with my illegally-purchased Resmed Vauto unless various aches and pains introduce sleep/wake junk.
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