Sleep Doctors vs. Patients: CPAP Data Monitoring

It’s common knowledge that one important way of increasing effectiveness of CPAP therapy is to constantly monitor the data that the machine records, which includes time used, lead rates, effective AHI, and other variables. Traditionally, this data is somehow taken to or transmitted to the patient’s sleep medicine doctor who analyzes the data to monitor compliance and effectiveness, in light of how the patient is doing. 

 

There’s been a growing movement amongst CPAP users to analyze their own data, and some people are even changing their own pressure settings. What I’ve noticed is that these are the most committed users, willing to do anything to get a better night’s sleep. In many cases these people know more about their xPAP machines than the DME vendors (durable medical equipment) or even their sleep doctors. Patients will know all about the latest xPAP models and try new mask models, in many cases paying extra beyond what insurance pays for.

 

There are many vocal arguments for and against this type of self-monitoring, but the issue I want to bring up is a sense that not all, but many sleep doctors are reluctant to have the patient take an active part in monitoring their own therapy. They’re not being told to go elsewhere, but the essential message that patients seem to hear is, "if you do this, you’re on your own." DME vendors are also caught in the middle.

 

Sleep doctors argue that self monitoring is good, but changing pressures should always be done after consulting the treating physician, since improper pressure can lead to problems such as ineffectiveness or even central sleep apnea. Patients argue that they should be able to manage their own condition for the most part, like what a diabetic does. 

 

There’s no black or white issue here—there are some patients that are fully capable and responsible enough to do this on their own, and others that are not. An ideal situation is to have a system in place where patients that want to take more responsibility can do so without feeling like they’re being frowned upon. This takes extra effort on the part of the sleep doctor and a trusting relationship with good communication. 

 

If you’re a CPAP user, where do you lie along this continuum? How much extra effort do you take to maximize your results?

 

Please note: I reserve the right to delete comments that are offensive or off-topic.

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11 thoughts on “Sleep Doctors vs. Patients: CPAP Data Monitoring

  1. Dr, Park, I agree with you that there seems to be an increasing number of Obstructive Sleep Apnea (OSA) patients that are learning as much as possible about their condition and desiring the control in their therapy in order to optimize their results. These patients seem to have a better understanding as well of just how serious NOT treating the condition can be to their health. The nice thing about patients learning more, and sharing with others their findings, is that the new, uncertain patient can benefit from both the encouragement and the mentoring. This is a win-win situation.
    I see that the sleep doctors and the DMEs do not always understand that diagnosis of OSA is a psychological blow to a person. This time period from being diagnosed to the point where the treatment is working optimally is a tender time. Many patients give up in this time period because they do not have the support they need to perservere. More help is needed in this area.
    As sleep medicine grows and develops further, I would expect for the patients to have more of a hand in their treatment and perhaps the doctor, the DME and the patient can become a well working team. The field is in a very dynamic state currently with the new laws that are being enacted regarding accreditation of the sleep labs as well as Medicare and Medicaid reimbursements for the diagnosis and treatment options.
    I do hope that the patient will be gently led to be an advocate for their own treatment. There will always be doctors and DMEs who do not think the patient is capable of this, but with encouragement, they really are.
    As far as my treatment, I have the software, card reader, smart card, Auto titrating CPAP, and a pulse Oximeter that I use to monitor my therapy. I also consult with my primary care physician before I make changes to my pressures because he knows me well and we are a team in my treatment of my OSA. I feel great.

  2. There is simply no need to withhold this information from patients. A former DME supplier of mine told me that I could not access the data because I could access the pressure and change it. I care about my health. That’s why I want to view the menu. That’s why I go to a doctor. That’s why I’m wearing this large uncomfortable mask. I would not randomly adjust the pressure.

    When a doctor writes a prescription for pills, does he write it for one pill at a time? No. Is the patient required to drive across town to their doctor everyday to take each pill? No. The doctor writes a prescription for at least a month’s worth. The patient could take all the pills at one time if they wish. But a responsible patient (most patients) take the pills as prescribed. Why? Because they are taking the pills for their health in an effort to maintain their health.

    Why would it be any different with a CPAP and sleep apnea? It shouldn’t, but it is at this time. I have every right to have access to my data.

  3. I am one patient that has been using my CPAP for almost a year now. I (and my wife) am amazed at the difference getting a good night sleep has made for me. I am much more rested and alert, virtually eliminating the need for the daily napping ritual. This is most appreciated where driving for several hours each day, highway hypnosis was a real concern. I have no interest in changing any of my prescribed settings but recently have had an interest in knowing more about my nightly data. 

    Just this morning I found I could obtain this data from my CPAP because I started reading the manual. This data was never discussed by the technician that set me up. I was simply shown how to turn on the device and basically call if there is a problem. Luckily there has never been one. I thought the data was only obtainable when I slid the data card in to record it for my Sleep lab and Dr. He interpreted the data for me to a certain extent but not without exuding a certain attitude of reluctance . What is the big secret? Ignorance is never blissful but I guess some Drs. think in this case that it should be.

  4. Great post. I’ve been using CPAP for a year, and I’ve bought a card reader and software to monitor my data. Having this info has been very helpful to me, since having more data helps me tweak things other than the pressure level, including mask tightness, sleeping position, humidity level, and so on to an optimal setting. As a result, I’ve been able to get my AHI from around 3.9 (before I started reading data) to an average of 0.3 since I’ve been reading data.

    Most of the benefits have come from lowering my leak rates. Getting feedback on what keeps the leaks down (including realizing that I was mouth-breathing at various points in the night) has helped me manage my use better.

    I can appreciate the relative dangers of adjusting my own pressures, and, just as I wouldn’t adjust the dosage on a med without talking to my doctor, I wouldn’t adjust pressure without his advice. Some people might not be as conservative about that, and that is a concern, just as it is with self-medicating patients.

    But, not allowing all patients to review data to the degree of detail they wish is cutting off a potential benefit to many people, I would think.

  5. Basically I have no confidence in my sleep doctor. I have gotten more information off the internet than what the doctor has given me regarding treatment.

    I often wonder why there are so many posts to different apnea web sites. Is it because people cannot get enough information from their sleep doctor?

  6. Mu husband has been on the CPAP machine for about 6 years. There is no monitoring by a doctor. He has had a cough since December, has been to 3 doctors and they found that his lungs are clear.

  7. This is the only area of medicine where one is treated for a condition and not told to follow up anytime in the future. It amazes me, really, that any one complies with it at all. I do as I want to feel better, but most people don’t have a proper fitting mask, don’t like the positive air pressure, and so many other problems. It is very disappointing that there is not more concern from the docs in this area.

  8. I am also patient that has used CPAP for years now. The difference ind getting a good sleep night is Superb for me. I am rested and alert, No need for the daily ciesta. This is appreciated.

  9. It is a simple fact that no doctor can devote as much time and attention as an educated patient can to his own sleep data.

    It’s not possible.

    It’s also true that the more interest a patient takes in the therapy the more likely the patient is likely to remain complient.

    I changed my machine settings first night — they were not optimal and it was entirely obvious to me — some people should not do this of course but they are adults and entitled to make their own decision, especially on something such as this which cannot directly harm them.

    I have changed them every day or so (since I made conservative changes each time) for the first week to reach a typical 0.5 AHI with 100% compliance (both by day and by time spent trying to sleep — if I am sleeping the mask is on), practically ZERO leak rates.

    Also, most of my events are actually machine artifacts so the AHI is almost certainly lower.

    Diagnostic sleep study: AHI 49 — Current (1 week) average: 2.71 (and decreasing).

    Had the original settings remained unchanged until even my 3 week follow up then my apnea would have remained at around 12 AHI; instead it is essentially non-existent.

    Even at the follow-up the doc would only have a few minutes (per patient) to quickly review and estimate the next changes — and then he told me he only sees a patient about once PER YEAR.

    Sleeping much, much better; waking much less often during the night; had my first full night’s sleep through in years….

    Why would anyone want to go through at least 3 more weeks of hell?

  10. I do not use a DME. I pay for my CPAP and supplies out of pocket. I am 100% compliant – meaning I use my CPAP 100% of the time and for over 4 hours every time I use it overnight (less when I use it for naps). My first DME committed Medicare fraud and I had to involve the Attorney General of NY to get the matter resolved. That DME is still one of the biggest DMEs in the country. My second DME sent me supplies I did not order, charged my insurance for supplies I did not order, and charged both myself and my insurance company incorrectly. The amount of stress caused by all of the BS with DMEs forced me to buy my CPAP supplies out of pocket from an online source.

    I do monitor my statistics (therapy hours, AHI, etc.) via my machine. I also bring my machine and SD card to a sleep doctor once a year. I would not, however, change my pressure setting without my doctor’s suggestion to do so. When I had my sleep study done, they tried numerous pressure settings and did not find any difference between what my pressure setting is (and has been for a decade) and higher pressure settings. I feel that my CPAP therapy is effective and that is why I use my CPAP 100% of the time.

    I believe patients should have the right to choose where they get their CPAP machines and supplies from and should not be forced to use DMEs approved only by their insurance companies. In my personal experience, sleep doctors and insurance companies have relationships with DMEs that constitute a conflict of interest, which result in all of them profiting financially off of their patients. I personally believe this is unethical and I resent being used as a cash cow to bilk Medicare and my Medicare Advantage insurance simply because I have sleep apnea.

  11. I am a new cpap user. My cpap has some kind of device that feeds information back to my supplier, they know how many hours I used the machine, what the settings were and so on. I understand that my insurance requires compliance of at least 4 hours of use in a 24 hour period. I really don’t like the idea of some else having information on me like that. I feel it is an invasion of privacy. Everything we do now is monitored. People even have devices that monitor where they are at all times. I recently was asked to dog sit for some people who were on vacation. They have an alarm system on their house. One night after I had set the alarm, I realized I had forgotten to shut the garage door. I had to turn of the alarm, shut the door and reset the alarm. I immediately got a call from them from another state asking why the alarm was shut off and then set back on after less than a minute. I realized they knew when I was went to bed and set the alarm. They knew when I was in their house and when I left for some reason. They knew if I even opened a door and went outside. After that I told them I did not want to dogsit for them anymore. Too much monitoring of our every action these days.