CPAP Basics - 1

[NotLazyJustTired]

Most patients at the point of setup have no idea that the option even exists to learn about and monitor their therapy, so no surprise that only 3 patients have asked.

+1

We keep circling back to the education theme...it seems to be a common thread.

[Loreena]

Most patients at the point of setup have no idea that the option even exists to learn about and monitor their therapy, so no surprise that only 3 patients have asked.

+1

We keep circling back to the education theme...it seems to be a common thread.

It's a matter of simple economics. Tell the patient that there's software to monitor his AHI and give him the clinician's manual, and the patient quickly finds out he could have self-titrated himself, thereby eliminating the need for sleep centers, etc. (at least in the majority of cases). They're never going to do that. Too much money is at stake.

[Todzo]

I can tell you what the rate is for my company judging by the patients who have asked or even shown interest in tracking their own therapy. In the last 5 years I have done approx. 2100 cpap/bipap setups, only 3 patients have ever asked or shown and interest in tracking their own data....that's .001% Now granted i have no idea what people do in their own home and some of them may have decided to take an interested in their therapy after they left my office, the percentage is still extremely low.

No one told them what there options were. They did not know unless they researched this on their own. Education should indeed be job one!!!!

I've sort of been waiting to see if anyone would bring up the comparison between this and other therapies/treatment monitoring.......like Diabetes, taking Coumadin/Warfarin and other things that need to be monitored. I can't imagine ANY doctor turning someone loose with insulin or Coumadin without any way of monitoring it. But, we've had people (DMEs) threateningly post on this forum that it's "illegal" to change our own machine settings and how many users have been told by DMEs that we couldn't possibly understand the data from these machines, etc., etc.?
Yet, it would appear that the "medical establishment" has no concerns that the compliance percentage of THIS therapy is so pathetically low. The manufacturers obviously aren't eliminating the "bricks" (non-data-capable machines) or pressuring the DMEs to train the users to monitor their therapy with data-capable machines and software. In my opinion, giving a CPAP user a non-data-capable machine is comparable to giving a person with diabetes a glucose meter that doesn't display blood sugar levels. ARE YOU KIDDING ME?!?!?!?!?!?! Even with diabetes, there are "Certified Diabetes Educators" to help people learn about and monitor their therapy.


Den

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You make a very good point Den. The need for feedback is obvious to those who regularly use it and have taken the time to understand what it means. It should be, I do believe, obvious that to not monitor xPAP therapy places the patient in danger of under treatment and/or damage from the unstable breathing induced by the pressure of xPAP. In the future I kind of expect some really good class action suites to be in the news.

Todzo

[Jimster]

To Data or Not To Data, That is the Question?

Let's at least look at both sides of this Data Issue.

First let’s look at “Never Nellie”.

She’s the type of Lady that relies on the professionals around her and the way she feels.
She’s never a bother to anyone. She’s sees her Doctor, and Clinician on a regular basis
every six months or so, and tells herself that she feels Good Every Day.
Life is good.
To Never Nellie’s credit she would seek Immediate Medical Attention if anything ever got off course between her Doctor’s Visits.
………………………………………………………………………………………………………………


OK so now let’s look at how “Daffy Data” handles himself every morning.

He gets up and downloads his CPAP SD Card, along with his nightly Oximeter data,
combines the two, and begins his morning ritual reviewing his Data Charts up and down, with a cup of hot coffee in hand.
As he ponders over his charts he notices that his Leak Graph, is again showing peaks over 85L/m even after he had tighten up his head gear the night before.
After trying to fix the leak himself the quickest thing for him to do was to send a PM to Pugsy; he did and changed his mask liner as suggested.

……………………………………………………………………………………………….

All’s well that ends well.

Wait! Hold that Door, Just In!

Never Nellie has had a car wreck.

The way that I found that out was that I was talking to my All State Insurance Agent.
He told me on the golf course that Never Nellie was on her way to her Doctor’s Office
for her 6 month check up and she fell asleep at the wheel.
She ran smack into a Utility Pole. She only hit her head on the steering wheel and fortunately only tore up the front of her car.

Her good friend Daffy Data was on his way to play tennis that morning and saw the wreck and took her to the emergence room.

Later, Never Nellie’s Doctor told her that the reason that she fell asleep at the wheel was that she wasn’t getting enough quality rest.
He told her that he had her Clinician Check her CPAP Device’s SD Card,
and they discovered that her Leak Rate had been off the Chart for over a Month.

Jim

[Todzo]

Wait! Hold that Door, Just In!

Never Nellie has had a car wreck.

What happened to Never Slow Storman Norman Truck driver and Never Slow Sally Bus driver?

[Loreena]

Later, Never Nellie’s Doctor told her that the reason that she fell asleep at the wheel was that she wasn’t getting enough quality rest.
Jim

Really? How many people need to be told they don't sleep well. This is one I've never understood.

[Todzo]

Later, Never Nellie’s Doctor told her that the reason that she fell asleep at the wheel was that she wasn’t getting enough quality rest.
Jim

Really? How many people need to be told they don't sleep well. This is one I've never understood.

Obstructive Sleep Apnea is well known to affect executive functioning and in particular "self monitoring".

Even if the person figures out that they are not sleeping well or feeling well the part of executive functioning called "problem solving" does not work so they will not figure out what they need to do about it.

Yes, yes, yes, we need to monitor as we go while using xPAP - all the time for as long as we use the therapy. We simply do. And we need to know that we need to do this.

Education is indeed job one!!

Todzo

[Uncle_Bob]

[.

[Drowsy Dancer]

Later, Never Nellie’s Doctor told her that the reason that she fell asleep at the wheel was that she wasn’t getting enough quality rest.
Jim

Really? How many people need to be told they don't sleep well. This is one I've never understood.

The City of Erewhon sued Never Nellie to recoup the damage to city property (the telephone pole) and Never Nellie's medical records obtained in discovery revealed that her treatment was suboptimal. Her insurance company paid the damages and then cancelled her policy...

[The Choker]

Let's at least look at both sides of this Data Issue.

First let’s look at “Never Nellie”.

OK so now let’s look at how “Daffy Data” handles himself every morning.


Jim

What about Reasonable Ronnie? Once her therapy is under control, she looks at her detailed data once or twice a month.

While Daffy Data is reading his card every morning, Reasonable Ronnie is already busy and productive at work and next month will be promoted to head of the department Daffy Data works in. She will transfer Daffy Data to the manufacturing plant in the Texas panhandle and will not have to look at his tennis tan and listen to his obsessing over data again.

[Catalytic]

Later, Never Nellie’s Doctor told her that the reason that she fell asleep at the wheel was that she wasn’t getting enough quality rest.
Jim

Really? How many people need to be told they don't sleep well. This is one I've never understood.

I can answer this. Those people throw the machine into their closet, or give it away, because it DOES NOT WORK FOR THEM. When they go to their doc, he says keep using it, it will get better. And when said person then is retired from his job prematurely because the new company that bought the corporation he works for doesn't like that he's getting up there in years and takes catnaps on his lunch break...and therefore loses his medical insurance...he gets flat out angry at the machine, because it didn't do what the doctor said it would, and then he pulls out his Springfield Armory 1911 and blows the damn thing to bits.

And this person worked closely with the medical profession for 50 years...and didn't know a damn thing about efficacy data, or that there were MANY different styles of masks, and lots of things to troubleshoot to help the therapy get better...

Yes, I know this person well, and no, it isn't me, I'm only 2 weeks into my CPAP journey, and had to fight to get here.

[DoriC]

What about the scenario where .patients opt only for periodic visits with their Drs to monitor their therapy but they have a brick so what is there to monitor except the usual "how do you feel" ? That's really scary.

[SleepWellCPAP]

Hello All and good evening!

Thanks for all your posts! And it's only Monday! Wow, what a group, you all are top notch! I'm glad that knowledge about OSA as a condition is mentioned as important. Without a doubt, knowing what devastating effects OSA has on the body is a powerful motivator for anyone to continue usage. Data? Another excellent point! Now days, downloads make it so much easier by providing details as to what's happening during sleep, it really is true.

Will check back in tomorrow, can't wait.

Jim

[Catalytic]

What about the scenario where .patients opt only for periodic visits with their Drs to monitor their therapy but they have a brick so what is there to monitor except the usual "how do you feel" ? That's really scary.

That's exactly what the person I was talking about did. Not that he opted for only those periodic visits, but that that's when they were scheduled. And when the doc asked, "How do you feel?" and was told the patient was still exhausted, the response was "give it more time."

[zoocrewphoto]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

There are a couple reasons I disagree with you.

One, the data is VERY important if the titration isn't accurate, the person isn't feeling better, etc. How can a doctor sole the problem without data? Just trial and error, and that doesn't always work too well. If the machine doesn't even record data, then how is the doctor supposed to figure it out? At the very least, all machines should have data for the doctor.

Two, since most people get their machines without knowing anything, even if they get a machine with data, it doesn't mean that they know to ask about it.

The real questions should be -

How many people gave up after giving it an honest go, because nobody realized that their therapy was not correct?

How many people would be successful with treatment if they had been given a machine with data (and either a doctor who viewed data, or enough curiosity to find it themselves)?

How many people would be interested in the data if the knew they could see it?

I got lucky with a good machine and a good doctor. My first DME was shocked that I changed the time on the machine's clock to fix my problem of split nights. I fired them in less than 2 months, so they have no idea that I viewed the data. They probably don't know that I fired them. They never contacted me after they sent me a new card with a mailer to send the first one in. They probably think I gave up and quit. They don't care. They sold a machine and compliance passed.

My mom was not so lucky. She's one of the ones who didn't improve despite compliance. Over the years, she went up and down on compliance. Quitting for years at a time, or only doing half a night and calling it good. She also had a really lame 1 page summary of her sleep study. Nothing that really explained how serious this was or how bad this could be untreated. Her machine was so old, it had no data, and she was denied a new sleep study.

Then I got diagnosed. I came home with a fancy machine with data and a new mask, that looked really nice. She tried on my mask, and within a couple days, had her own. She was back to using her machine, but only about half the night. She was curious about my data, and happy to see me with real improvement. Once I had my 6 week followup and compliance check, we both had the same idea. Do a couple partial nights with her using MY machine. She already had her own mask and hose, so all I had to do was change the setting to her prescription, and then download the data before I took my turn. I am a severe night owl, so she was able to get 4 hours of sleep before I was ready to go to bed.

At her prescription, she had an ahi of 3.4, but she had a cluster of events over 30 seconds, and one of them was over a minute long. She made an appointment with MY sleep doctor the next day. We had to wait a couple weeks to get in, but I took the reports of 2 partial nights. Her straight 10 prescription, and one that was 10-13. He prescribed a new machine with it set 10-15. She feels better now, and she uses it every night, all night.

THAT is the difference that data made.