Change your philosophy about CPAP!

[SleepyCPAP]

The title says what I want to say to health care providers, insurance folks, DME's, and machine manufacturers. Thanks to DreamDiver for suggesting I make a post on this, after seeing something I wrote in another thread.

The newest machines with full data capability are digital wonders, and that can change everything: our assumptions, our treatment, and our health -- if we catch up with our minds and assumptions.

I came across a study recently which pointed out that Congestive Heart Failure patients who had residual AHI (they were on CPAP, but not getting low enough AHI) did not show the heart-health success that otherwise comes from CPAP. I'm not going to pretend to understand everything in the study, just that this was about the only time I'd seen a researcher point to the difference that lower AHI makes, instead of how much "time on CPAP." Hooray for finally getting the point: effective treatment leads to better health. Hours of use isn't what to look for anymore, the data from data-capable machines is worth looking at to determine effectiveness!

Why is more time on CPAP (or whatever PAP mode of therapy) still the measure? Was this some relic from the days when machines were vacuum cleaners with a screw adjustment to approximate pressure settings? Sure, back then if you had your mask on longer it could be assumed you were eliminating residual untreated AHI, but the only way to confirm it would be a sleep study. But back in those days you had to leave the analog (mercury) thermometer in your mouth for at least a set amount of time too. Helloooo to everyone still stuck on hours-of-use: please wake up and time warp back from the good old days when you warmed up your car in the driveway for a set amount of time before driving your rented movie back to Blockbuster Video ("please be kind and rewind")! I'm guessing most Docs and DMEs watch digital at home, and do the rental online or on screen from the comfort of their couch. These are intelligent, willing-to-embrace technology adults, whose training and protocols at work don't match what is in all other areas of their lives. Digital electronics improve more quickly than medical education, apparently.

The second shift that comes with the newest machines (with full data) would be the assumption that folks have to wait to be diagnosed in a lab. When my spouse said my snoring and periods of not breathing were disturbing, I told my doctor. It also fit with other issues we'd been addressing (being tired and dragging through life each day). My doctor is great, and followed the protocol -- if it is reported that I'm not breathing, then get approval to do a sleep study. Problem with this is it takes time. Months of time. And I have good insurance. First the overnight check with the thing on my finger to see if I'm getting oxygen desats (oh yes I am! Yikes!). Then set up an appointment to go overnight to the lab, first for testing (no surprise, they confirm OSA), then schedule another overnight appointment a month or two later to figure out CPAP pressure. Then wait for a DME to call and tell me my "brick" is ready to pick up. Months of not using CPAP (just two nights over 4 hours, the ones in the lab). Lots of untreated residual AHI. New APAP machines can shorten that (if you want links to studies, see my other post, about APAP as good as PSG): go from the oxygen desat test, to in-home APAP set-up. Have the DME help with mask. It all happens closer to digigal-age timing, in the comfort of your own home. Leave the sleep labs to help those who should not have unattended at-home APAP, or for those who are still having problems -- those techs won't have one-to-two month waiting periods to get you in.

How do I say this better, less of a rant, and to the folks (not on this forum probably) who would do something to change things?

--SleepyCPAP

[SleepyToo2]

I wouldn't change anything - I think you said what a lot of us are thinking! Hours on the machine is easy to measure and understand. Interpreting the AHi data requires more brain cells than most of those in "authority" seem to possess. The equation that links hours on the machine, AHI, and pressure is way beyond most of those folks. So they are up that river in Egypt, leaving us all without the paddle we need to navigate the waters of our condition.

Good luck with getting any changes made soon, however!

[forthguy]

The second shift that comes with the newest machines (with full data) would be the assumption that folks have to wait to be diagnosed in a lab. When my spouse said my snoring and periods of not breathing were disturbing, I told my doctor. It also fit with other issues we'd been addressing (being tired and dragging through life each day). My doctor is great, and followed the protocol -- if it is reported that I'm not breathing, then get approval to do a sleep study. Problem with this is it takes time. Months of time. And I have good insurance. First the overnight check with the thing on my finger to see if I'm getting oxygen desats (oh yes I am! Yikes!). Then set up an appointment to go overnight to the lab, first for testing (no surprise, they confirm OSA), then schedule another overnight appointment a month or two later to figure out CPAP pressure. Then wait for a DME to call and tell me my "brick" is ready to pick up. Months of not using CPAP (just two nights over 4 hours, the ones in the lab). Lots of untreated residual AHI. New APAP machines can shorten that (if you want links to studies, see my other post, about APAP as good as PSG): go from the oxygen desat test, to in-home APAP set-up. Have the DME help with mask. It all happens closer to digigal-age timing, in the comfort of your own home. Leave the sleep labs to help those who should not have unattended at-home APAP, or for those who are still having problems -- those techs won't have one-to-two month waiting periods to get you in.

As I recently posted in another thread, your suggested path is not much different than my recent experience. I went from referral to in-home sleep test with a WatchPAT to OSA diagnosis to an in-home titration with a loaner APAP in around 2 weeks, with my permanent machine coming 11 days later after a review of the titration data. I just sort of assumed that's how it worked for everyone, though my time here has taught me that it's hardly the case.

[Sheriff Buford]

Here's my 2 cents: I think that if "compliance" ever went from hours used to AHI compliance, we'd all be in big trouble. There are so many things that can affect AHI. You can get yourself into trouble by chasing AHI numbers. I read today a forum member telling another another forum member that a .7 AHI was great. If I had a .7 AHI for a few days in a row, I'd be screaming for Pugsy from Texas all the way to Missouri . But that's me. I get a .2 or .3 everyday. Some folks would kill for either .7 or .3 AHI and at best they get a 3.0. With all the issues that determine a good AHI, I don't want the fact that it would determine if my insurance paid for my machine and called it "being in compliance" (or not). With socialized medicine coming our way, the government may very well determine compliance by our AHI.

My gut tells me that the autopaps we use now are very basic and the next generations will be much better. So much better that in the future, we'll call the machines we are using now will be called "leaf blowers".

Sheriff

PS: Obama: if you are monitoring this post... er... I didn't mean it.. my wife told me to say that stuff about socialized medicine... I'm a good liberal...

[chunkyfrog]

I realize that my case is simple, and I accept the fact that my doctor's time is better spent with more difficult cases.
I'm fine with your help, but, locally I would like to help new patients with the mechanics and economics of making cpap work.

[NeedHelp2]

The preferred path you described is the way my path to APAP went because I insisted on it. So another way is to educate potential patients.

[49er]

Here's my 2 cents: I think that if "compliance" ever went from hours used to AHI compliance, we'd all be in big trouble. There are so many things that can affect AHI. You can get yourself into trouble by chasing AHI numbers. I read today a forum member telling another another forum member that a .7 AHI was great. If I had a .7 AHI for a few days in a row, I'd be screaming for Pugsy from Texas all the way to Missouri . But that's me. I get a .2 or .3 everyday. Some folks would kill for either .7 or .3 AHI and at best they get a 3.0. With all the issues that determine a good AHI, I don't want the fact that it would determine if my insurance paid for my machine and called it "being in compliance" (or not). With socialized medicine coming our way, the government may very well determine compliance by our AHI.

My gut tells me that the autopaps we use now are very basic and the next generations will be much better. So much better that in the future, we'll call the machines we are using now will be called "leaf blowers".

Sheriff

PS: Obama: if you are monitoring this post... er... I didn't mean it.. my wife told me to say that stuff about socialized medicine... I'm a good liberal...

Obamacare is about as much socialized medicine as you are a liberal:)

[DreamStalker]

Here's my 2 cents: I think that if "compliance" ever went from hours used to AHI compliance, we'd all be in big trouble. There are so many things that can affect AHI. You can get yourself into trouble by chasing AHI numbers. I read today a forum member telling another another forum member that a .7 AHI was great. If I had a .7 AHI for a few days in a row, I'd be screaming for Pugsy from Texas all the way to Missouri . But that's me. I get a .2 or .3 everyday. Some folks would kill for either .7 or .3 AHI and at best they get a 3.0. With all the issues that determine a good AHI, I don't want the fact that it would determine if my insurance paid for my machine and called it "being in compliance" (or not). With socialized medicine coming our way, the government may very well determine compliance by our AHI.

My gut tells me that the autopaps we use now are very basic and the next generations will be much better. So much better that in the future, we'll call the machines we are using now will be called "leaf blowers".

Sheriff

PS: Obama: if you are monitoring this post... er... I didn't mean it.. my wife told me to say that stuff about socialized medicine... I'm a good liberal...

Obamacare is about as much socialized medicine as you are a liberal:)

Agreed ... it is coporatized fascist and monopolistic medicine.

[Wulfman...]

Agreed ... it is coporatized fascist and monopolistic medicine.

And, according to the Democratic Senator from Montana (Max Baucus), it''s going to be a "train wreck".

For those who still don't believe that it was written by the "Big Pharma" and the insurance industries (intertwined with the Administration), do a Google search on "Liz Fowler".


Den

.

[SleepyCPAP]

Thanks for the vote of confidence in what I was writing, SleepyToo2. I've got to disagree about the brain power of the folks, I've not doubted the intelligence of the folks I've worked with, I just don't think they've updated their thinking, or they are stuck with procedures that need updating.

It gives me some hope, forthguy, to hear that in at least one place the process is taking advantage of the new technology and getting unstuck from the old ways! Do you have any idea what helped things shift where you are? Did anyone talk to you about the shift? Knowing that might make a difference where I live.

chunkyfrog wrote:
I realize that my case is simple, and I accept the fact that my doctor's time is better spent with more difficult cases. I'm fine with your help, but, locally I would like to help new patients with the mechanics and economics of making cpap work.

chunkyfrog, to me that sounds like a good script I could use talking with someone. It is more heartfelt and helpful than the rant I was trying to tone down, and would draw the other person in. But who would I say it to, a DME? DME manager? An elected official?

NeedHelp2, I have be open about my CPAP use with folks who are friends and acquaintances, and helped direct someone to CPAP dot com, tried to get another to try again with their therapy, and cheered on someone else who was getting the hang of it. When I started back in 2010 I asked around to see if there were groups to join, but didn't get anywhere.

Sherrif Buford, you started off a storm of responses, but it seems more for the politics than for your cogent point about how we need to think about compliance issues gone awry! I didn't realize that your typical AHI and mine have been so close. I too get upset when my AHI doubles, triples, or quadruples in a string of nights, even if it reaches the target level of others it isn't "right" for my health needs, and I feel it. I'm thinking the philosophy change would also bring a different focus on "we have to figure out how to get to the range of AHI which is healthy and sleep which is good." We're human, and we are not going to be the same in our AHI (or RDI) responses to PAP therapy, but I'm very much wanting to be asked something other than "are you using your machine for at least four hours each night?" as the compliance question. We need studies which will show a range of "effective" -- I don't recall the cut-off for the heart patients, for example, but a study with many patients might give both an average "good" AHI (or RDI or whatever) and the extended "whiskers" on the chart to show the variability. And I would hope that first-timers get monitored for how well their AHI is coming down in their beginning weeks, and if it isn't it means they need a follow up (or a BiPAP, or ASV, or other ways of addressing what's going on) -- not a failing grade. I'm hopeful you are right that the next generation of machines make ours look bad. But I hope that is because they are smarter about treating us well, reporting and flagging more than we now expect, in ways that shed some light on things (not "better" because Philips has added yet another humidification setting but still leaves out key info on their machine displays, or "better" because ResMed added another color to put on the casing).

Den, if big pharma wants us to be lined up to buy medicines for all our symptoms, then we're stuck with hours of use, because otherwise effective monitoring and treatment of sleep apnea (and central sleep breathing issues) will make us too healthy and eliminate the risk of many of the secondary things they are ready to "treat." I'd like us to see them disappointed, along with sleep doctors who wanted the easy cash from high-volume plain-vanilla sleep studies, DMEs who wanted to pass off no-data machines for full reimbursement, etc.

--SleepyCPAP

[Boyce]

It is dangerous for patients to be trying to interpret the crude and very incomplete data that CPAP machines provide.

[SleepyCPAP]

Boyce wrote:
It is dangerous for patients to be trying to interpret the crude and very incomplete data that CPAP machines provide.

I can't tell if you are being sarcastic, perhaps you are hoping we'll change people's attitudes that CPAP is different from thermometers or diabetes monitoring devices. I don't know your personal experience with trying to interpret data, Boyce, but I have not encountered any danger from reading the reports available from the software for my machine, or looking at the numbers on the screen. A simple way of looking at it is if AHI is trending up over time, then the therapy is not doing as well. If AHI is going down over time, then therapy is improving. If the numbers remain fairly constant, then therapy is the same. That, combined with a person's own assessment of "how am I feeling" gives the start of a good follow-up conversation with a doctor, partner, and support group (including this forum), where two brains are better than one.

If you checked the link to recent medical studies about the accuracy of machines, I think you will find that "crude" could be upgraded to "accurate."
viewtopic.php?f=1&t=90703&p=834272&hili ... SG#p834272

I grant you that a sleep lab would have other data channels at their disposal. Some people on this forum have added substitutes for a few of those, with their Zeo machines and Pulse Ox devices, and using their smartphones with snore-sensing apps.

--SleepyCPAP

[Sheriff Buford]

but I'm very much wanting to be asked something other than "are you using your machine for at least four hours each night?" as the compliance question. SleepyCPAP

Are you hearing what you are saying, or did I totally missed the question.... which I normally do... Who is primarily concerned about compliance? Answer: insurance companies. They want to make sure you are giving them more bang for their buck... If I'm hearing you right, if a insurance company's compliance requirements are high or low AHI's.... then we are all in big trouble. I'm in favor of the hours used being the "compliance factor" and working with your doctor (or er.... Pugsy) on getting my AHI in line.

Sheriff

[SleepyCPAP]

Sheriff,

I think the two of us are just going to have to disagree on this one. I find my insurance company makes terrible decisions about how to support lower long-term demands on their profits -- such as expensive sleep studies paid for by them, but not figuring out if I'm really getting healthy afterwards. I think the AHI question would be a shift of focus which might spur them to think more about effective treatment. Insurance already admitted that we don't control our AHI, by accepting the diagnosis. But the company can escape paying for better machines by making the whole discussion about hours (which is in our control) instead of effective treatment (for which they'd have to pay more). Sleeping more hours costs them nothing -- but getting the right machine, or going to the doctor or lab for follow up (when AHI isn't adequately dealt with) takes away some of the profit from the premiums.

But I will agree with you about Pugsy's advice and support. Perhaps DMEs and Insurance should be asking "are you a part of a support group which helps encourage you in your therapy, and do you listen to Pugsy?"

--SleepyCPAP

[Boyce]

I can't tell if you are being sarcastic

Go on. Make my day. Write "brick" on my prescription.