xPAP technology & patient management - thoughts

Reading through the threads about xPAP machine technology and software, I'm kind of puzzled about how "behind" manufacturers seem in active patient involvement and related technology. Snork1 wrote in another thread:

The outdated serial cable is about my only "WTF???!" with the 420E after about 4 days of ownership, and that is a liveable drawback.

...and that was also something that I wondered about as I browsed through CPAP suppliers' websites. No USB? No IR or Bluetooth? Those aren't shiny new expensive technologies anymore, they're standard. And the software! All I can say is..."!!!!!" - from what I can gather, manufacturers just seem kind of, well, belligerent about getting into the idea of proactive patients. Perhaps this is influenced by sleep specialists and clinics and DMEs, presumably they're the ones that xPAP manufacturers would survey about machine use and all that; I think nearly everyone here has a tale of frustration or horror about the general ignorance that can be displayed by such.

It's a little bit apples and oranges, but compare it to the technology involved in the treatment of diabetes, mainly Type 1, and arguably more complicated to treat. My brother's been Type 1 diabetic since he was 5, and the gadgets you can get now are amazing. Take insulin pumps - they use complicated algorithms just as AutoPAPs do, and store an awful lot of data, which can be accessed directly on the pump unit, and be downloaded and analysed on you or your doctor's PC. (And not via serial cable, heh.) ...And not only does the software allow input from the machine for tracking and management, it also allows output to the insulin pump. You can program in macros for certain mealtimes etc, and an interesting variety of other instructions can be sent to the machine to ensure optimal self-management. Diabetics, even without the higher-end tech, are trusted to self-manage with minor assistance from a doctor, adjusting their treatment as necessary - and getting your insulin wrong has rather more alarming consequences than getting your air pressure wrong. But imagine if sleep apnea patients were allowed the same. Software that would let you adjust your pressure/pressure range as you tracked trends in the data, with initial training from professionals who actually knew what they were talking about.

Is it that awareness of sleep apnea and related sleep disorders is just plain lower than that of other conditions such as diabetes, even among medial professionals? So there's less incentive all around for encouraging an active, involved self-management program for patients, and this then trickles back to the manufacturers?

I don't know, maybe I've got it all wrong and there's some other reason(s) for the weirdness with xPAP technology development and lack of encouragement for patient self-management. I'm just speculating here. Anyone got any thoughts or information about this?

Lola,
I believe its a timing, and paradigm problem.
If you think about it, and read about the history of sleep medicine you'll discover a number of interesting things:

* It's a very very young science. I don't remember exactly (and can't find the book...) but if I'm not mistaken, it's not much earlier than the earely 1970's that it started developing.

*The sleep doctor's patient is asleep - and I think that has an unconcious effect on the way the patients are percieved. One sleeping person - looks and sounds pretty much like the other - and as far as conscious functioning is concerned - while asleep we are no more capable than babies. Add this to the mystery that accompanies being asleep, and you can see why many of our sleep doctors and technicians - who see us at our most unprotected state, forget that we are sentient beings.

*The treatment too takes place only when you are asleep

* Machines that can 1. Identify your breathing patterns 2. Record them 3. React to them are rather new. A cpap machine is one of those contraptions that have exceptional need put on them: They have be mechanically capable of doing their jobs night in and night out for year on end (a five year warranty is no laughin matter - no computer, printr, car, mixer, what have you is sold wiht such a warranty). A chemical reaction the measures the level of sugar is easier to handle than the signal processing needed for an autopap. And, we expect the machines to be silent (another mechanical demand) , they have to do their blowing and computing without overheating etc. I'm sure Wulfman and WAFlowers have more to say about that - possibly, to correct me on this point.

*Historicaly, the first sleep apnea patients cured, were cured by a tracheotomy. That is a very one time, very dramatic, very effective procedure. It was also the first proof that obstruction in breathing effect sleep, health and the quality of living. The pradigm of a one time solution has remained: Come to the sleep lab, we'll discover your sleep apnea and send you out with a machine that will solve all your problems.

*So: you have one time sleep studies, which are supposed to define a person's pressure needs - though for some people those are no more than unreliable (in the statistical sense of the word) snapshots. And you get one time titrations, again, as though that one time measurement can be relied on.

*Self treatment had been part of diabetes treatment from the very beginning. People were giving themselves insuling shots, and pricking themselves to measure blood sugar level from very very early on - before the invention of microprocessor. Thrapy conceptions and norms were very well developed by the time microprocessors were put to use in supporting the therapy.

I believe it'll get better for sleep apnea too.

Just my thoughts.

Bill, Den, Snork - what does it look like from your professional points of view?

O.

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Ozij,

I concur with everthing you've said.

Just some "rambling" thoughts:

Although I'm pretty new to this therapy (like many others here), from what I've read (and interpreting in my mind), I think the technology is "maturing" in this field of medicine.....albeit verrrry slowly.
I think part of the problems are that more could be done but it's a matter of trying to keep the costs of the machinery down, too. I'm sure it takes some pretty sophisticated sensors and programming to make it all work together. That all takes money.....LOTS of it. The companies have to recoup those costs somehow.
The level of expertise in the DME suppliers I think is somewhat limited, too. (understatement) I recently asked one DME manager if they downloaded the sleep information from the smartcards and machines and she gave me a strange look.....I got the distinct impression that was a "No". She also stated that I was the FIRST and ONLY person she'd met that was this "into" my own therapy (after pulling out a bunch of printouts from Encore Pro and MyEncore and showing them to her). I had borrowed a couple of pulse oximeters from them for a couple of overnight "studies" and when I returned them for the download and printouts was when this dialogue took place. We also got into a lengthy discussion concerning oximetry, CPAP machines and sleep doctors, so I think she got the impression that I knew more than the typical CPAP user that they were used to dealing with.
Along the lines of what Derek had talked about, I had also spoken with some people at Respironics (early June) about coming up with some "user-friendly" software that the CPAP users could use to monitor their therapy. This was after I had brought to their attention that their AHI "averages" DIDN'T average. When I took the daily numbers from my Encore Pro printouts and averaged them, they were anywhere from .2 to .6 points ABOVE where my actual averages calculated. In other words, if the Encore Pro was reporting an AHI of 1.8, my calculations came to 1.2. They tried to then claim that those numbers were a "trend". I then asked how they could be "trending" UP (higher) when my actual numbers were going DOWN. They shut me off by saying that the software was written for clinicians and DME's. HUH??? So, that means the clinicians and DME's are working with skewed numbers?
I'm so thankful that Derek came up with HIS version!!!
Obviously, I use both, but will put my money on the numbers generated by "MyEncore".

I believe that Johnny reported that at the conference they attended in July in Denver there was talk of more sophisticated equipment coming at some point in the future. Some of these (current) machines already have attachments that will monitor the oximetry (I believe Resmed is one of them with the Reslink Therapy Managment System).....although it's quite expensive.

I guess in the meantime (when technology catches up with our expertise), we do the best with what we've got and hope that more of the insurance companies "get with the program" in covering more of these different types of machines, that the DME's and sleep doctors become more knowledgeable in prescribing the more sophisticated machines AND that somebody will come up with some masks that "one size fits all" and there will be NO leaks and will perform flawlessly and give everyone an AHI of 0.0......HA! (Oh....and no more snoring)

Hope I didn't put you all to sleep with the "rambling".......(if I did, I hope you had your masks on and your machines running)

Best wishes to all you hoseheads.

Den

ozij wrote: If you think about it, and read about the history of sleep medicine you'll :

* It's a very very young science. I don't remember exactly (and can't find the book...) but if I'm not mistaken, it's not much earlier than the earely 1970's that it started developing[/url]

..... In fact, when an Australian researcher named Colin Sullivan invented the first CPAP in 1981, that’s precisely what the early pumps were.
Before that, I hear that it was routinely a trache that was performed..if they even knew sleep apnea was what you had...

http://www.mendosa.com/sleep_apnea.htm

Rats! Got "guested" on this one earlier, too......

Den

There are some rumblings of change out there:
Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?
Michael F. Fitzpatrick, Christi E. D. Alloway, Tracy M. Wakeford, Alistair W. MacLean, Peter W. Munt,and Andrew G. Day
Departments of Medicine and Psychology, Queen’s University, Kingston, Ontario, Canada

In summary, this study demonstrates that self-titration of CPAP in patients with OSA is as efficacious as manual titration in a sleep laboratory with similar subjective and objective outcomes. Patients in this study also received 30 minutes of education about when and how to change apnea and CPAP treatment.This allotment of time for education of each patient with a new diagnosis of OSA may nonetheless account for the superior CPAP compliance observed during both limbs of this study.The findings from this study imply that routine overnight polysomnography is unnecessary for the purpose of CPAP pressure titration.

Another link:
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viewtopic.php?p=12599&highlight=titrate#12599
In March, mikesus posted this study link and deserves the kudos!
http://ajrccm.atsjournals.org/cgi/conte ... /167/5/716

In the same discussion tomjax wrote:
Not sure if this is the study cited, but it is one done in Canada.:
http://www.sleep-solutions.com/clinical ... n_CPAP.pdf

RG wrote:
The link below is a Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004 by a sleep doctor who advocates that some patients who have obvious signs of OSA should be put directly on autopaps (auto-titrating cpap) without having to go through a PSG sleep study.
http://www.alaccoast.org/pdf/Phillips_0830.pdf
"Not Every Patient Needs To Go To the Sleep Lab" by Barbara Phillips, M.D. MSPH (requires Macromedia Flash to view)

I have over 20 years of high tech electronics mechanical engineering design under my belt (maybe that explains the bit of paunch), including a few chunks of time of medical equipment design.

My opinion of why CPAP therapy technology is so out of date....

FOLLOW THE MONEY.


Being a "recent" industry should make it more MODERN oriented, NOT entrenched in old technologies. So my GUESS is that the DME's and docs(the PRIME customers of the equipment manufacturers) are pretty clueless and also don't want the patients to cut into their easy pickings part of their profit margin, after the "health provider" took the effort to setup their business on the basis of windfall profits for their business models.

I also suspect that the manufacturers are part of or impacted by the Brain Drain going on in this country, where so many technical careers have been outsourced that we are losing our technical pool of people in this country (being the USA), and the companies are patching together designs with contract engineers that have no motivation to care, or turn over their staff of engineers so fast that there is no history for "lessons learned" to improve next generation products. So we get old technology just carried along and no incentive to change it, especially if it encourages high profits for ALL involved.

just my jaded opinion as an engineer though, after a glass of wine or two tonight..............