How does a Dr. track therapy with no patient data?

[Vallan]

Background: I'm a 1.5 weeks away from getting my S8 Autoset from my DME. I had my sleep study, halfway through the night they put the mask on me and collected whatever data. I'm to make a follow up appointment 90 days after picking up my machine. The original machine was an escape that can't track anything but compliance data,

So the question is, how can a sleep doctor track my progress effectively without ongoing data? It would seem the only thing a sleep doctor has to go on is compliance data and how I "feel" when I come in. He won't be able to track events, tell if I'm having an issue with mask leaks, etc. Even if I didn't want to see my own data I'm surprised everyone isn't sent home with a machine that gathers more than compliance data. Any pros have an insight?

[NEW YORKER]

I hear what you're saying..... I too have a machine that only tells of compliance and to top it off, I don't have a doctor. I know I am having issues but I can't even track my own therapy. I hope to purchase a machine that will track my therapy as soon as I can afford it. But it amazes me that these doctors and insurance companies give us these machines that don't allow us to collect data. As serious as our situations are, ya think they would want to track our conditions. Alot of people on this forum suggest taking your own therapy in your own hands and I think they are right. Nobody elese but you are gonna give a damm. So I would suggest to you that before you get your machine, make sure it gives more data than just compliance.

[Julie]

The doctor doesn't want to see clinical data - that would be too much like work. He just wants to see compliance so he can tell the insce. co. you're compliant. Pathetic.

[BleepingBeauty]

How does a Dr. track therapy with no patient data?

A: They don't.

From what I read, there are some sleep docs out there who gladly work in concert with their patients to optimize therapy by analyzing the data from the machine. But I'd venture a guess and say that the vast majority of sleep docs aren't interested in machine data and just want to know if you feel better.

As to why so many are still being given the bare-bones (compliance only) machines, that seems to be a matter of profit margin for the DME (they get reimbursed the same amount for a bare-bones machine or one that has full data-capability, so they pocket more $$$ by giving the patient the cheaper machine).

Also, from what DME employees have had to say on this forum, the vast majority of OSA patients have no interest in their therapy; they just want to put the mask on, hit the On button, and not worry about the efficacy of their treatment. We who have sought the help of this forum are obviously not in that category...

[sleepycarol]

I know at times I am amazed that patients don't want to know anything about their therapy, but the longer I am around the more I have to agree that the majority DO NOT care.

I know several people I know are now using cpaps. Not one can tell you the name of their machine, their pressure settings, the mask they use (oh, they can tell you full face, nasal, pillow -- but not the name), etc. And then some wonder why they struggle using their machine!! Duhhhhhhh!

[Wulfman]

From my perspective, they DON'T "care" about your therapy. All they care about is taking your money. If the patients have problems, the doctors send them for another sleep study......more income $$$.
In many cases, it's the function of the DME to check your compliance so that THEY get paid by the insurance providers

Occasionally, we read about the doctors who DO take an interest in their patient's progress through the data from the machines, but they're rare.
Some patients complain to their doctors about not feeling better after some period on the machine and the doctor just increases their pressure.......when in fact, the problem is more likely the patient is using a nasal mask and losing their therapy air from their mouth falling open at night. If they don't know they're leaking, the increased pressure means more therapy air going out their mouths at night. In my opinion, ONLY data-capable machines should be given to the patients. From that point on, it's up to the patient to decide how much they want to take charge of their therapy......AND, it would benefit the doctors in determining how well their patients are doing (if they care).

It's YOUR life. It's YOUR therapy.


Den

[Gerryk]

This doctor is only concerned with submitting to the insurance that you are using the machine, nothing else. Are their any other docs around that you could go to?

If your mechanic only worried that your car ran and not how it ran would you keep going to him?

Gerry

[howkim]

So the question is, how can a sleep doctor track my progress effectively without ongoing data?

Like most docs do, by patient reported symptoms.

[cinco777]

If your mechanic only worried that your car ran and not how it ran would you keep going to him?

Great analogy.

My first sleep Dr., once my Titration was done, didn't care whether my car had wheels - said all that was up to the DME. The DME ("A") screwed up 3 RXs and took two months to provide me with my "wheels". Talk about Dr. apathy

My second sleep Dr. told his RT to raise the pressure for all his "complaining" users, kind of like a mechanic raising the air pressure in your tires because your car doesn't drive right (and without asking any more questions and even checking the tire pressure first).

[fischdream]

I am a newbie, started cpap on November 3rd. I wish I had found this forum and done some research before my sleep studies and bought my machine. I did not have a choice of machines! When the sleep center called and told me the results of my first study they set me up the next night for the cpap titration and told me I would go home with a machine set for my needs and it would cost $150 for my 20% copay. I found out later, I have the cheapest machine on the market and gives absolutely NO data! It's either on or off! On the report I received, the sleep doc tells my PCP to monitor compliance! HOW??? I am also very frustrated with the mask I have! The first was the comfortgel full face and it was great for a little over a week, then it started leaking and no matter how I adjusted it, it still leaked. I went back to the sleep center and they gave me a comfortlite 2 with nasal pillow mask. Did not try the thing on me or show me how to properly wear it, nothing! I tried it for 2 nights and hated it! I felt like I was suffocating when I tried to exhale. I went back and they gave me a mask that fits over the nose and a chin strap. That worked pretty good except for the rain out. I crocheted me a hose cover, finished it yesterday. That stopped the rain out, but this mask is leaking now! It's as if the material the flap is made of is getting too thin. All of the mask I have gotten say NOT for Home use!!! Are they disposable or what? How long should they last? I would hope more than a few nights! I am getting very frustrated! I don't want to give up my therapy because it has made such a positive difference in my health already!

[sronsen]

howkim wrote:
Link most docs do, by patient reported symptoms.

There's a lot of truth to that. My primary care physician took control of my apnea from step 1, scheduling the sleep study, explaining the results and sending the script to the DME. The machine was basic and had no data recording capabilities He asked me, at each of my quarterly visits, if I was being compliant. After a year, he stopped asking. I occasionally complained about plugged sinuses affecting the comfort of my CPAP, and he adjusted my related medications accordingly, many times. I noticed a big improvement and my sleeping problems ceased. My wife undoubtedly told him that my non-breathing episodes were gone. On the other hand, he sent a close friend for two sleep lab follow-ups in 5 years, for what reasons, I don't know.

After almost 10 years, I got a fully data enabled, APAP on my own, and I learned that I have better AI and HI scores than almost anyone who has posted them on this forum. So, the old adage, "how well you feel is the important thing", certainly holds true in my case, and I can't fault my physician for not poring over a lot of numbers. I'd rather have him listening to me, which he does very, very well.

[Vallan]

back to the car analogy I guess it's like asking your mechanic (DR) to troubleshoot any problems without ever seeing the car (data) but strictly by how you say it drives (how you feel).

I think I'll bring my own data to my follow up session and see if he even cares to talk about it. Also, i think I'll be getting the complete copy of the sleep study and my prescription for the equipment before the appointment so he can explain any of that I have questions about. I never would have considered that or had been prepared for the bare bones equipment they tried to pawn off on me had it not been for this forum!

[Sleeprider]

I never had a follow-up with a sleep specialist, The notes were sent to my PCP, and because I had been active on the forum, I had an idea how to coach my physician to write a script for better equipment. At my follow-up, I brought in a print-out of compliance data and some detailed graphs. It was the first time my doctor had ever seen that stuff, and she was very interested (and amused).

The bottom line is we get out of this, what we put in in personal advocacy and research. Unfortunately, the education needs to start before the first sleep study or any equipment is issued. That is why any new member here gets as much support as they need to get up to speed. It is very hard and expensive to undo early apathy, mistakes, or manipulation by insurance companies, DME suppliers and medical professionals. The biggest problem is how much effort goes into issuing the cheapest possible equipment. To save maybe $200 for a data-capable machine, our health and treatment is compromised, and the only way to measure therapy efficacy is with a $2000+ sleep study. WTF is wrong with that picture?

[DreamOn]

I share everyone's frustration that xPAP machines that aren't capable of reporting useful therapy information are even SOLD! Even if the patient is not interested in their own therapy, the doctors should be checking to see where their AHI is. How we feel is of utmost importance, but I believe that being able to see how we're actually improving (by the numbers) is SO important to keep people motivated to continue with treatment. And it helps us to figure out what's wrong if things aren't going as well as they should.

I am a newbie, started cpap on November 3rd. I wish I had found this forum and done some research before my sleep studies and bought my machine. I did not have a choice of machines! When the sleep center called and told me the results of my first study they set me up the next night for the cpap titration and told me I would go home with a machine set for my needs and it would cost $150 for my 20% copay. I found out later, I have the cheapest machine on the market and gives absolutely NO data! It's either on or off! On the report I received, the sleep doc tells my PCP to monitor compliance! HOW??? I am also very frustrated with the mask I have! The first was the comfortgel full face and it was great for a little over a week, then it started leaking and no matter how I adjusted it, it still leaked. I went back to the sleep center and they gave me a comfortlite 2 with nasal pillow mask. Did not try the thing on me or show me how to properly wear it, nothing! I tried it for 2 nights and hated it! I felt like I was suffocating when I tried to exhale. I went back and they gave me a mask that fits over the nose and a chin strap. That worked pretty good except for the rain out. I crocheted me a hose cover, finished it yesterday. That stopped the rain out, but this mask is leaking now! It's as if the material the flap is made of is getting too thin. All of the mask I have gotten say NOT for Home use!!! Are they disposable or what? How long should they last? I would hope more than a few nights! I am getting very frustrated! I don't want to give up my therapy because it has made such a positive difference in my health already!

To fischdream:

Welcome to the forum! I had never even heard of your CPAP machine -- a PureSom! According to the information on https://www.cpap.com/productpage/2964, it appears that this machine doesn't even record the hours of use! Wow!

Obviously, there is no way that you (or your doctor) are going to be able to get any information from that machine, so I guess the doctor would judge the success of your treatment solely by how you feel.

Many DME suppliers have a 30-day mask exchange policy. It sounds like you've been switching masks already. Keep switching until you find one that works. Insist that they fit you properly and show you how to adjust each mask. You are paying for a product and a service. With some masks, it's important that the straps aren't too tight. Each mask comes in different sizes, and they need to spend some time finding the right one for your face. Heck, I tried on about 13 masks before I chose one!

You should inform them that your machine is not working out for you and insist that they provide what you need. Do some research here regarding fully data capable machines. At the very least, I would insist on a Respironics Pro (not Plus!) or a ResMed Elite II (not Escape!). The Pro and Elite II machines will give you the data you need to monitor your therapy. They also have adjustments to make exhalation more comfortable. That can be one of the reasons you give them for needing a better machine, but I believe that the lesser Plus and Escape also have exhalation relief, so don't let them sell you one of those, as they can't give you AHI and leak information. There are a few other machines that will work as well, but those two are the most widely available manufacturers. If they don't have one in stock, then insist that they order one for you. The insurance company is billed the same amount regardless of which machine they provide you. (They're making more profit by selling you a bare-bones machine.) I don't think it should cost you any more out of pocket to get a fully data capable machine. They may try to discourage you though. If they won't exchange machines, perhaps you can return the machine and purchase a good machine online. You will need your prescription for that. Maybe the threat of doing that would be enough for them to do the job they're being paid to do!

Yes, a mask should last more than a few nights -- many months! I have no idea what's happening with that. Are you using anything harsh to clean it? Soapy water (original green Palmolive) and occasional disinfecting with a vinegar/water solution is good. What is the current mask you're using? I don't think you mentioned. Maybe someone who uses that one can give you a few tips.

I love that you crocheted a hose cover! You may want to take a photo and post it on this thread sometime: viewtopic/t47017/CPAP-on-the-Cheap-and- ... tions.html. We'd love to see it.

Please don't give up. All these problems are solvable, and the results will be worth the extra effort now! Please search the forum to learn as much as you can, and ask questions if you have any. It may help if you start a new thread. Lots of people here love to help newcomers! We were all newcomers once ourselves. Let us know how you're doing.

~ DreamOn

[Slinky]

Background: I'm a 1.5 weeks away from getting my S8 Autoset from my DME. I had my sleep study, halfway through the night they put the mask on me and collected whatever data. I'm to make a follow up appointment 90 days after picking up my machine. The original machine was an escape that can't track anything but compliance data,

So the question is, how can a sleep doctor track my progress effectively without ongoing data? It would seem the only thing a sleep doctor has to go on is compliance data and how I "feel" when I come in. He won't be able to track events, tell if I'm having an issue with mask leaks, etc. Even if I didn't want to see my own data I'm surprised everyone isn't sent home with a machine that gathers more than compliance data. Any pros have an insight?

Okay, Vallan, so far you have had a splt-night sleep study. How has it come about that you are getting the S8 Autoset Vantage or S8 AutoSet II? At your insistence or on order of your sleep doctor? Is this the same sleep doctor that let you be provided w/the Escape? Is the AutoSet to be your new permanent xPAP or is this just a loaner?

I have NEVER had a sleep doctor (I've seen 4) EVER look past the first page, the Statistics page, of the AutoScan 5.7 or later the ResScan 3.7 software printout and ask how I am doing. And then 1] being told I ask too many "unnecessary questions", 2] being told my questions were "irrelevant", 3] had to sit thru a tirade about how the data from these xPAPs wasn't as reliable as a full PSG. The 4th doctor and I have come to an unspoken mutual understanding. I don't plague him w/any but simple questions or with unreasonable demands and he pretty much gives me what I want. I've come to recognize his "limitations" and don't ask more of him than he is willing - and able - to comply with.