Respironics data inaccurate? Fire doctor?

[napstress]

Saw Sleep Specialist last week.

Issue #1:
She mentioned that she questions the accuracy of the data from the Respironics machine. She said that the machine takes three seconds to determine whether an event is an OA or a H—but that 10 seconds are required to allow events to reach completion. The data shows OAs and Hs happening at the same time. ResMed, on the other hand, waits a full 10 seconds before labeling the event, which is a more accurate response.

Naturally, I asked her if I could switch to a ResMed machine. She said she doesn't know how to use their compliance data, that it doesn't make sense.

Questions for you, dear Forum members:
1) Do you agree that the data from the Respironics machine might be inaccurate?

2) Is it common for Sleep Specialists to have difficulty interpreting data from the ResMed machine? Can people on this forum understand it?

I find it bizarre that one machine possibly provides inaccurate data, and the data from the other machine cannot be interpreted.

Issue #2:
I was dismayed that she had not printed off—or even looked at—any data since my last appointment. She hadn't done so for my last appointment, either. She hasn't looked at my data in over a year. I had called a week before to tell her that I put the wireless modem back on my machine so she could obtain the data. I requested that she look at the data for four specific weeks, in addition to whatever she likes to look at, because I wanted to discuss them at the meeting. I explained that I would print the reports off, myself, but that I was having problems with my printer.

When I found out her assistant hadn't printed off the reports, the Sleep Specialist said that she had been unable to get the information from Apria. I showed her my SD card, but she said that she had no way of reading it.

Here is what I did get out of the appointment:
1) I should continue with meditation (something I started with my own initiative).
2) I should continue with going to the couch when I wake in the middle of the night until I get sleepy again (again, my initiative).
3) A TSD likely won't work for me b/c my nose is the issue, not my throat.
4) Her questioning the Respironics data.

Second round of questions:
1) Would anyone recommend that I act as liaison between Apria and the Sleep Specialist to get my data to her before my appointments? I'd resent it, but if it needs doing, well, I'll do it!

2) Am I right to feel angry? I have spent hours over the past year crunching numbers trying to find any key to achieving better sleep consolidation and quantity and a lower AHI. I spent a few hours preparing for just this appointment (finding the most representative data, compiling my questions, etc.). And I paid $40.00 for pretty much no information. While I am grateful that she spent an hour with me (which I neither requested nor expected), I am really surprised that this is the second time she has not prepared for an appointment at all. Is it at all believable that she cannot read my SD card? If I can, why can't she? I know she uses EcorePro2. Do you think she can't read the card/obtain the data or just doesn't want to? Or, given that it is not likely to be accurate, she doesn't think it's worth it, but doesn't want to say that to me, outright? Would it be appropriate to find another Sleep Specialist at this point?

[Pugsy]

I think that her questioning the data is just her personal opinion.
Sounds like she wouldn't know what to do with any data from any machine if it jumped up and bit her on the butt. If she doesn't know how to even use the compliance data from a ResMed machine.....that's pretty sad.

There was a study a while back (no I don't have link) where they compared the scoring data from 4 or 5 machines with sleep lab scoring and all were pretty much considered fairly accurate. ResMed and Respironics and F & P machines if I remember right.

Just because the Respironics report shows the flagged event in the middle of the event doesn't mean that the final determination was made 3 seconds into the event. For all we know a marker was put there and then the actual category added after the final determination.

Respironics has been a leader in the industry for years and this is the first time I have heard of anyone finding fault with the reporting. Somehow if this were true then how come they have stayed in business this long?

[johnthomasmacdonald]

my sleep test gave me an ahi of 21. I note that with my respironics pr560 that the highest ahi it ever has shown is 21. If i'm following the doctors claim correctly, i should be getting a much higher number on my machine than the "real" sleep apnea number.

[squid13]

I think I'd find a new Sleep Specialist to go to that new something.

[Guest]

Some thoughts and things to consider........

These machines:
Have been thoroughly tested by the manufacturers and approved by the FDA.
Use "air flow", sophisticated sensors and programs/algorithms to identify "events".
We typically don't breathe the same when we're awake as when we're asleep.
When we're asleep, the event detection and reporting are probably pretty darned accurate.
When used over a reasonable period of time, the machine reports will give an adequate amount of useful information.
They're not like a full-blown sleep study, but when you know and consider the limitations, they can be very beneficial.
Too many "sleep doctors" don't keep up on the technology and want to keep their money flow coming in through sleep studies.

About seven and a half years ago, I dumped my "sleep doctor" after a couple of visits and after he tried to minimize (disregard) the reports coming from my machine.

As far as I know and am concerned, Respironics (now Philips/Respironics), ResMed and DeVilbiss all manufacture excellent machines. Personally, I'm a Respironics user.

The "medical professionals" work for YOU. YOU pay for their services. This is YOUR therapy. YOU need to take control of it. Nobody else will care about it as much as YOU will. (See a pattern here?)

Hang in there.

.

[ems]

I bring the SD card with me when I see my sleep specialist. Her assistant gets the data from the card and it's ready for the doctor when I see her. I don't second guess my doctor when I see her. I never get the impression that she doesn't know what she is talking about. Occasionally I'll suggest something that I've read about here. If she agrees she'll tell me why - if she disagrees as it pertains to my specific treatment, she'll explain why.

Napstress... yes, I would see another doctor.

[JayR_1945]

From a former computer Doctor.

<the Doctor will see you now>
$40.00 for an hour with the Physician. That's cheap. If I spent 8-12 years in expensive and grueling medical school to listen to sick people complain, my rates would be outrageous.
And the noisy complainers would sit in the waiting room for a long time, hoping they will leave.

That being said, this whole, new area of sleep and breathing is not easy. I'm still with you.
I'll bet if you shared some of the printouts with your fellow volunteer, experienced sleepies, you'd get a more cost effective analysis.
<sorry, the Doctor just left for an emergency (golf) appointment>

For sick computers, take two antiviral diskettes and call me in the morning.

[archangle]

From a former computer Doctor.

<the Doctor will see you now>
$40.00 for an hour with the Physician. That's cheap. If I spent 8-12 years in expensive and grueling medical school to listen to sick people complain, my rates would be outrageous.

$40 for an hour? Nobody gets an hour of the doctors time for a regular visit. How about $80 per patient, and 4 or 5 patients an hour. Probably a lot more than $80 per visit if the doctor is a "specialist."

[archangle]

Saw Sleep Specialist last week.

Issue #1:
She mentioned that she questions the accuracy of the data from the Respironics machine. She said that the machine takes three seconds to determine whether an event is an OA or a H—but that 10 seconds are ....

Yeah, she's an idiot.

The data from the machine might be a little less accurate than the in lab PSG test, but it's valuable, objective data. You get it every night. You get it in your actual sleep situation, the position you sleep in, not strung out by having to take a test in a different bed, with extra wires attached to your body, etc.

Your insurance is not going to pay for another PSG every few months to monitor your progress. The CPAP data tells you how you are doing under actual treatment. It shows how you progress over time. Every single night.

You might argue a bit about the finer points of the definition of an apnea and how you measure it, but a "Respironics Apnea Indication" is a good clue to what's going on, even if it doesn't entirely agree with the scoring Joe Technician is going to get in a $2000 overnight PSG sleep test. Even then, Technician Bill may give you a different AHI score from Technician Joe even for the data for the same test.

If the Respironics says you're doing good, it's a really good indication you're doing well. If it says you're doing badly, you probably are. If she'd get up off her lazy backside and spend a day learning how to read Encore, she'd find that she can get a lot of very valuable information out of the data your CPAP records, including graphs of your actual breathing so she can make her own decision whether it's a hypopnea or apnea.

There might be some gray areas where you can debate how meaningful the CPAP machine data is, but most of the time, you can have pretty good confidence the patient is breathing well, or that he's having real apnea problems.

Unfortunately, her willful ignorance is all to common in the medical field. The medical mafia finds reasons to downplay anything that cuts down on your need for expensive lab tests. They even manage to convince themselves of their own lies from time to time.

[sylvie]

Maybe I'm ignorant on this point...but I don't know why anyone would need a sleep doc after they get the software and a data capable machine and can see the reports themselves to see how they're sleeping and can then tweak appropriately. Why?? And I would never need another sleep test either. What am I missing?

[napstress]

Thanks for the feedback, everyone. Does anyone know how it works with insurance to switch to another Sleep Specialist? I don't want another sleep study; my 4/4 titration experiment is enough for me. I just want someone to help me resolve the insomnia issue (which is what I went to this doctor for in the first place! I had never even heard of UARS). Would I just ask my PCP for another referral? I have been seeing this doctor and wrangling with CPAP therapy for 1.5 years.

It is true that I have an excellent insurance plan that allows me to pay a specialist $40.00 out of pocket; however, I make less than $40.00/hr. and sincerely hope the recipients of my work are getting better service than what I am getting from this doctor—that is, barely anything at all!

[ems]

Does anyone know how it works with insurance to switch to another Sleep Specialist?

It depends on what insurance you have. Do you have to stay in network or can you go to any doctor you choose? I think you should call your insurance company.

Also, your records belong to you. You or your new doctor can get your records so that you won't have to redo tests that aren't necessary.

[old64mb]

Would it be appropriate to find another Sleep Specialist at this point?

Sorry, but I think you're being rather unfair to her, and given your concerns I'm not sure another MD is going to be better.

First and foremost, she gave you a full hour of time. If you are familiar with how doctors have to fight insurance, that is really a rather tremendous gift. Chances are for a followup, she will get paid for 30 minutes or more likely 15 minutes. (Being a specialist, she'll get paid well, but lousy doctors don't give you an hour.) She doesn't get paid for downloading data. That's Apria's job, and if Apria doesn't get it to her, it's not on her to followup - that's her assistant's job, but it's also yours.

Second, in terms of preparation, remember that most sleep MDs see patients who really have no clue as to how their sleep is doing besides "I'm exhausted" or "I am not really liking this thing over my nose." The group that deals with effective data and even more effective questions from the data are a tiny minority. In general an MD doesn't have any real obligation to 'prep' for a patient unless you're doing something far more serious than a followup, like an anesthesiologist plan prep prior to surgery, and unless you're a special patient (e.g. complex apnea, Kleine Levin, etc) you're not going to get that in sleep medicine.

Third, as far as data analysis, it's on you to get your sleep MD a readable, and more importantly, succinct and accessible set of it. It is Apria's job too, but Apria has the reputation they deserve for customer 'service', and it's realistic that you shouldn't expect much from them and should act as your own liason. I'm sorry you were having problems with your printer, but that's not your doctor's fault (although I agree, they should have an SD card reader and Encore available.) You could have also used any number of places to print stuff, or even put it into pdf format and emailed it. I sympathize with having prepped for a good deal of time and not getting anywhere with it, but it's not your MDs job to do the grunt work. They don't get paid for it by insurance, they have assistants to deal with everything else, and if you don't have it ready for them when you walk into their office, they're not going to read it.

Now, all that said...I'd be a little concerned that she was slightly dismissive of the machine data, although I do tend to think people here put way too much faith in numbers what is a fairly blunt instrument. (Individual numbers from machines aren't that helpful, but interpreting them to show trends are.) However, to fire someone over that when you didn't have numbers to present her? I think you're overreacting.

Cheers.

[archangle]

Maybe I'm ignorant on this point...but I don't know why anyone would need a sleep doc after they get the software and a data capable machine and can see the reports themselves to see how they're sleeping and can then tweak appropriately. Why?? And I would never need another sleep test either. What am I missing?

It's not always that simple. Maybe if you keep a good AHI and sleep and feel OK. Maybe not.

I am personally not going back to any doctor about my CPAP unless I have to, but I don't say that's the right path for everyone.

I'm a definite techie geek, but I screwed up my CPAP machines and made myself really sick. At that time, I knew how to change the settings, but didn't have the card reader and software to read my data, and I wasn't even checking my own AHI.

[napstress]

it's on you to get your sleep MD a readable, and more importantly, succinct and accessible set of it. It is Apria's job too, but Apria has the reputation they deserve for customer 'service', and it's realistic that you shouldn't expect much from them and should act as your own liason.

it's not your MDs job to do the grunt work. They don't get paid for it by insurance

OK. I didn't know this. I figured that, since I did not learn how to access the data myself from her, that it was something she does. I got the manual and advice on how to read the data on this forum. If I didn't take the initiative to access and learn how to interpret my data and she isn't responsible for doing it, then what's the point of the data?

I am truly surprised to learn that doctors are not expected to look at patients' numbers before annual appointments.