The CPAP Customer --- It's Not Who You Think

Comment

Comment by Judy on March 21, 2009 at 1:51pm

Unfortunately, the FDA (in the US) dictates who Respironics and the other manufacturers' "customers" are - and you are right, it isn't the end users, the patients. You are placing the blame on the wrong shoulders. Blame the medical profession, blame our idiots in Washington, blame the FDA but don't waste your time and energy blaming the manufacturers.

Resmed developed and provided the advanced patient menu for their xPAPs, Respironics produces the patient version of their software, EncoreViewer. Puritan Bennett (now Covidien) has made their software, Silverlining (and recently, Sandman) available at a reasonable cost to their users for quite some time. The laws in the USA are VERY DIFFERENT from other countries regarding our xPAPs. So take your beef up w/the FDA and your government legislators, the true guilty culprits.

Comment by sleepycarol on February 8, 2009 at 7:02am

I think the key is getting ALL cpap users DATA-CAPABLE machines. Claire, if I read your profile correctly you have a Resmed 7 Lightweight. It is an entry level machine and doesn't provide any detailed data but compliance, meaning the number of days and hours you have used your machine. So even if the data was available via the web for download, your machine's information wouldn't provide any useful information on your treatment.

I feel all users should be given data capable machines that provide more than just compliance numbers. As far as being able to access the information from the web, I am unsure how that will drive the economics of the cost of the machines since those machines will cost more to produce, although Resmed does have the technology to do this on some of their machines, but I am unfamiliar with their machines. At the present time, data capable machines are available that provide detail data, via the data that is downloaded into the computer by a card reader and software -- I would think that the blind and visually impaired would have access to this same information as long as they purchased the card reader and software just like the rest of us. In my opinion, the blind and visually impaired have the same options that us sighted users have at the present time.

Comment by Claire A. Murray on February 8, 2009 at 5:55am

My comment is directed at the statement that some machines permit the user to view data directly on the machine, thus web downloadable data isn't necessary. THIS IS Oh So Wrong! The visually impaired or blind user of a device CANNOT view the data on the machine but CAN download and view the data from the web.

Thus, it is imperative that all users be given equal access to the data and that means providing it in a manner that is viewable by ALL users.

enough said?

Comment by Daniel on January 21, 2009 at 12:24pm

I have several points to make:
- Numeric reports for diabetics have real meaning and patients can easily be taught how to interpret those numbers. AHI and Leak statistics are attempts to quantify fuzzier concepts and in my opinion require greater expertise and experience than most providers are willing to share with patients.

- I became a DME provider specifically for sleep apnea because I too am a hosehead. When I got my first CPAP, I had a totally different career - one that placed a very high value on good customer service. The provider (it has five letters in the name...) basically handed me a machine and a mask and said good luck. I struggled for more than three months before I found out that alternative masks even existed. With the dot com implosion of 2001, I had to change careers, and I settled on sleep disorders because I knew there had to be a better way to do things.

- I am proud to say that if you live in the San Francisco area and call ResMed's 800 number asking for a knowledgeable provider of their equipment, you will be directed to my company, SomniHealth. I personally believe their ResScan software is a little tougher to interpret and use than Respironics, but it has just as much, if not more good information in there. I work with one sleep lab that insists that I dispense Respironics equipment because their doctors like seeing only one type of report. I don't argue with them because at least the doctors are reading the reports, and asking for regular updates from me, which I applaud.

- Three cheers to Angela D's comments. Right on target!

Comment by Angela D. on January 21, 2009 at 8:17am

I have been in the sleep profession for over a decade and it's all too clear that the lack of "upfront" patient education and care is one of the biggest obstacles in providing long term quality care. Too many patients do not know enough about their diagnosis or their equipment. The downloads are very helpful indeed, as well as patient feedback, but all equipment is not created equally. The different manufacturers use different technology to count, register, flag, track and treat apnea events.
The sleep professionals sending the prescriptions into these DME providers, should track and verify that the patients are educated and that the service from the DME was of high standards. Someone has to hold the DME responsible for having properly trained RTs and great up front education and patient care. If the service or training is poor, the MD needs to stop sending that company prescriptions until the problem is resolved and they have proved worthy of performing PAP set ups. Get them where it hurts($$$), so to speak...
Patients need to complain to the Dr. that prescribed the CPAP. The staff will take role of liason between DME & pt. It is also easier for the MDs to make sure that the regional sales reps. from the manufacturers, have properly trained the DMEs on the types of equipment that they want to prescribe. Eventually the good DMEs will rise above the bad DMEs and hopefully we can save future CPAP users from the frustration and lack of knowledge so many others have faced in the past. (if the Dr. don't want to listen, staff won't help???, you need to change doctors!!)

Comment by Dave D. on January 21, 2009 at 7:07am

As with anything, for patients that can make use of this data and want it, it should be available to them. One must keep in mind that the simple act of being involved in this discussion on this website sets us apart from the masses that use (or are supposed to use) PAP and do not have a clue. Not that we are any smarter or capable, but that we are interested and concerned about or health. The vast majority do not have that insight.

Comment by Judy on January 20, 2009 at 8:49pm

Daniel Levy,

I realize I've come down pretty heavy on your profession and I certainly didn't mean to sound like I was aiming my comments at you personally. I've had the misfortune to first encounter a less than desirable or helpful and less than truthful DME RT and then a heck of a nice DME RT who doesn't know the Resmeds or even want to know or try to explain the data from the ResScan software.

I would DEARLY love to have a DME RT such as yourself who IS willing to interpret the data downloads rather than have to struggle thru trying to interpret the data for myself!! I certainly wish you were in my neck of the woods and took my insurance! I'd be knocking at your door, except I get the impression that you most likely don't have the ResScan software and the experience w/the Resmed devices either??? *sigh*

Comment by Judy on January 20, 2009 at 7:13pm

Oh *sigh*

"the data report doesn't include any interpretation. Without being thoroughly trained in what the data means, it can easily be misunderstood."

And apnea patients are not as intelligent and capable as diabetics. We are a dumb and ignorant lot. HORSEPUCKIES! Yoo hoo! "Apneans" are every bit as capable of being educated as the diabetics!!!

"That is supposed to be the responsibility of the DME provider." Yep, it sure is and it is unfortunate that too many fail miserably in that respect. Not to say that there aren't good local DME providers out there - but there sure aren't enough of them. The CPAP failure rate is PROOF of that!

CPAP therapy is left to the WRONG HANDS. DME providers aren't expected to educate and train the diabetics on monitoring and adjusting their therapy are they? Who DOES educate and train the diabetics in monitoring and adjusting their therapy? Where is that equivalent for the CPAP therapy patient?

Comment by sleepycarol on January 20, 2009 at 12:07pm

In my opinion it IS about the patient taking responsibility for their treatment!! Patients should be educated about their treatment -- after all who has the most at stake in their therapy -- certainly not the DME.

My DME (and those in my rural area) do NOT know squat about cpap equipment nor do they care.

When I picked up my first machine the RT (a trained registered respiratory therapist) gave me an M series PLUS machine and had the nerve to argue with me that it provides useful data including events that happen during the night. I was also told it was NOT in my best interest to get involved with MY therapy!!! Guess what I changed DME's.

For those wanting to know -- THE PLUS M series only provides compliance data -- nothing useful about that except for the insurance companies and the DME's.

I CAN interpret MY OWN numbers as I am not stupid and have learned through much studying what the numbers mean and why they are important to my health. Yes, I have done the "horrible deed" and changed my own pressure. It was only by tracking my numbers did I realize that my therapy wasn't working for me -- my doctor is fully aware of this change and is okay with it -- she knows I don't do it blind and I have the knowledge and information to do it. She has stated I probably know more about sleep apnea than she does as I have read and read and studied about sleep apnea, the various machines, masks, what the data means, what to do with the data, etc. After it is MY health on the line.

Comment by Daniel on January 20, 2009 at 10:42am

Sometimes patients forget that it isn't about the numbers - it's all about how you feel when you wake up in the morning, It's about not falling asleep while your driving. The apnea/hypopnea index is an artifical construct that is an attempt to quantify the severity of the disorder. However, some people who have been classified with "mild" sleep apnea (AHI between 5 and 15) present symptoms that are just as devastating (or more so) than people who have "severe" sleep apnea with an AHI of 60 events per hour. The numbers simply don't tell the whole story.

In addition, the data report doesn't include any interpretation. Without being thoroughly trained in what the data means, it can easily be misunderstood. This leads to long customer service calls with Respironics, ResMed, the DME provider, or the doctor. As a DME provider, I am thrilled to talk to my patients about their data, and I rarely charge anything for a data download and interpretation (note that it isn't just for a download - it's for the interpretation). But ResMed and Respironics really don't want to speak to patients directly, nor should they. That is supposed to be the responsibility of the DME provider.

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