Issues with Compliance

[IreneN]

I'm with Palerider on this one. It's a knee-jerk reaction with me when I hear compliance, and in the CPAP area, compliance is all about insurance and DMEs--not a good place to be coming from. Nothing to do with helping the patient get healthy.

Even if you view it not from compliance, I also bristle at the idea of trivializing the whole thing with "gamification" and mobile apps.

It's a serious issue, and clearly the people doing the "study" have no concept of what the issues are in accepting and adapting to this therapy. Or as to what the products/tools already available are and what their benefits or shortcomings are. Others' suggestions to try it for a week (especially with no information as to efficacy) are right on.

They've got the wrong end of the stick. I'm assuming they are coming at it with the best of intentions, but with no understanding whatsoever.

[Wulfman...]

Apologies if the suggestion for a game or competition to encourage compliance insulted anyone. Our aim is to encourage compliance and one hypothesis was "gamification". I (and the team) completely understand this is a serious issue and that is exactly why we are trying to encourage compliance.

I'm also in the camp which finds the word "compliance" insulting.

You need to start with the manufacturers and force them to quit making the "bricks" (non-data-capable machines).
Without "data", a user has no idea of how well they're doing on a day-to-day basis. "Data" is crucial to making this therapy work. On top of that, they (doctors, DMEs and their employees) continue to tell the users that they CAN'T see the data or it's ILLEGAL to change (or make tweaks to) their own pressure settings......even if they have a data-capable machine.

Using a data-less machine is comparable to a person with Diabetes using a glucose meter that doesn't evaluate or record blood sugar. Telling someone to just use the meter and "guess" at how much insulin they need would be considered INSANE. Yet, that's what the CPAP makers, the doctors and the DMEs (and RTs) keep telling CPAP users.......based on what they (may have) found in a one-night sleep study.

The other side of this coin is that too many users "hate" having to use this therapy. It's not "macho" for men or the women think it's not "lady-like" to have this stuff strapped to them every night. Most of them probably never even look to the Internet for support and education with this. They just dutifully take the machine and stash it in a closet or sell it......and then die slowly of diseases (like Diabetes).......or.......quickly from a heart attack.

Fortunately, most APAPs or Bi-Level machines collect data in some form. The CPAPs are kind of split with some being data-capable, but too many are still not.

If a person is serious enough about using this therapy, and if they have "data" to look at, the odds are better that they're going to be more "compliant" with it.


Den

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[NCSUStudent]

Thanks Den

[NCSUStudent]

All,

If you were to design/get your optimal monitoring system, what features would you like to see in a xPAP machine? What features would you like to see on a mobile app that captures and reports data? What data points would you like reported to you?

[Krelvin]

Compliance is really an Insurance thing... and it doesn't really mean much to a patient.

Compliance is listed as getting at least 4 hours of sleep a day 70% of the time. So if I got only ~4 hours a day for only 70% of the time, I would be compliant, but also a complete wreck since that is clearly not enough sleep for me. Also, that means 30% of the time while being compliant I was getting LESS than 4 hours of sleep a day making the matter worse.

If I get less than ~7 hours a day, I am not getting enough sleep. So being compliant doesn't mean anything to me for my health.

I typically avg around 7.5 hours.

[Day_Dreamer]

If you were to design/get your optimal monitoring system, what features would you like to see in a xPAP machine? What features would you like to see on a mobile app that captures and reports data? What data points would you like reported to you?

I'd like all the info on sleepy head in an app
I'd like to be able to remotely load my data to my phone
I'd like to see a sleep position indicator that syncs with sleepyhead (like the pulse oximeter revision)

[Wulfman...]

If you were to design/get your optimal monitoring system, what features would you like to see in a xPAP machine? What features would you like to see on a mobile app that captures and reports data? What data points would you like reported to you?

Not sure who you're addressing with that, but.......
I already have mine. They're Respironics Legacy models (7+ years old and listed in my profile below) using Encore Pro and MyEncore software (also listed in my profile below). They were "state of the art" when I bought them and still tell me how my therapy is working......like they did nine years ago.

I don't have a "smart" phone or any other mobile device, so an "app" would not be of any use to me (as the machines I have couldn't transmit the data if I wanted them to).......and I have no intentions of changing. I'm a retired 40-year computer "tech" (network security and administrator) who is now fearful of the direction technology is going and the potential there is for hacking and other malicious things that are going on.

I also think it would be a "problem" with the manufacturers to circumvent or hijack their technology for other purposes.
I can imagine them having their lawyers reading their patents and copyright documents very thoroughly.......for ways of taking you to court. Many of them already have "remote monitoring" features, to be used by local DMEs, RTs, or even their own groups who do that type of thing.


Den

.

[bv1800]

Apologies if the suggestion for a game or competition to encourage compliance insulted anyone. Our aim is to encourage compliance and one hypothesis was "gamification". I (and the team) completely understand this is a serious issue and that is exactly why we are trying to encourage compliance.

From my read of the various threads in this forum over the past 8 months or so, I'd say that 99% of the OSA sufferers who aren't effectively using their CPAP, every night fall into 1 of 4 categories (and may over lap categories):

1) I don't want to do this - enough said
2) mask fit/pressure setting - 1 night in a sleep center and a mask that's recommended by the DME isn't sufficient to get it right, for 90% of OSA sufferers
3) different machine needed - DME's try to issue high profit, low end machines. Most patients need auto adjust machines (or even more advanced like Bi PAP even) and real data needs to be captured, so proper adjustments can be made. Obvious huge impact on fixing #2.
4) Frustration due to treatment requiring several weeks or months to show benefit. OSA sufferers have enough trouble getting good sleep, adding an uncomfortable mask and forced air pressure adds to the problem in the short run, even if it will help fix the problem in the long run.

As has been mentioned by others Sleep Doc/DME exclusion of the patient in the process and unwillingness to educate the patient so they can contribute to the decisions is a major issue. There are a number of reports in this forum where OSA sufferers have had the sleep doc or DME tell them that they can't be experiencing the symptoms that are being described. These people come on this forum and find not only are there a large number of others who had the same prob, but also get answers as to how to fix the problem.

None of these issues can be addressed by an app or gaming type program.

I'm hoping that I didn't leave anything out, but trust that others will pipe up, if I did.

[bv1800]

If you were to design/get your optimal monitoring system, what features would you like to see in a xPAP machine? What features would you like to see on a mobile app that captures and reports data? What data points would you like reported to you?

I'd like all the info on sleepy head in an app
I'd like to be able to remotely load my data to my phone
I'd like to see a sleep position indicator that syncs with sleepyhead (like the pulse oximeter revision)

X2. I like the way that you think. If we can get an armband that records our number of steps and reports the results to a bluetooth enabled device, why can't we get xPAP machines to provide our sleep data in the same way.

I also agree with the other comments regarding get rid of the no data bricks. We can get connections and feedback from the most trivial aspects of our lives (seriously, I can change the temp setting of my fridge from my phone?), but critical info like our sleep data requires a process that effectively comes from 30 yrs ago.

[Day_Dreamer]

[. If we can get an armband that records our number of steps and reports the results to a bluetooth enabled device, why can't we get xPAP machines to provide our sleep data in the same way.
I.

As Jedimark and palerider angrily shake their fist's in the air "these people will never be happy"

[palerider]

[. If we can get an armband that records our number of steps and reports the results to a bluetooth enabled device, why can't we get xPAP machines to provide our sleep data in the same way.
I.

As Jedimark and palerider angrily shake their fist's in the air "these people will never be happy"

hey, I'm one of those unhappy people
me: "mark, why doesn't sleepyhead understand the cms50i yet? why are you such a slacker?"
mark: "$&(# ^($#!"

and so it goes

[bv1800]

[. If we can get an armband that records our number of steps and reports the results to a bluetooth enabled device, why can't we get xPAP machines to provide our sleep data in the same way.
I.

As Jedimark and palerider angrily shake their fist's in the air "these people will never be happy"

An obvious oversight on my part is to point out that I in no way want this to be construed as a complaint regarding Sleepyhead. The fact that two members of this forum have to put the time and energy into creating a terrific product that OSA sufferers can use, is in fact an illustration of the problem. Sleep docs and DME's seem to think that since we are sleep deprived, we aren't capable of examining our own data and make intelligent decisions/adjustments to our treatment, that avoid delays of weeks or months to achieve optimal treatment.

My sincere apologizes to Jedimark and palerider if I've slighted their terrific work, in any way.

btw... I took 5 days of Sleepyhead reports into my doc (PCP; I don't have an actual sleep doc) and he was amazed at the simple and interpretable representation of a full night's sleep data.

[bwexler]

[. If we can get an armband that records our number of steps and reports the results to a bluetooth enabled device, why can't we get xPAP machines to provide our sleep data in the same way.
I.

As Jedimark and palerider angrily shake their fist's in the air "these people will never be happy"

An obvious oversight on my part is to point out that I in no way want this to be construed as a complaint regarding Sleepyhead. The fact that two members of this forum have to put the time and energy into creating a terrific product that OSA sufferers can use, is in fact an illustration of the problem. Sleep docs and DME's seem to think that since we are sleep deprived, we aren't capable of examining our own data and make intelligent decisions/adjustments to our treatment, that avoid delays of weeks or months to achieve optimal treatment.

My sincere apologizes to Jedimark and palerider if I've slighted their terrific work, in any way.

btw... I took 5 days of Sleepyhead reports into my doc (PCP; I don't have an actual sleep doc) and he was amazed at the simple and interpretable representation of a full night's sleep data.

All of these comments have hit the nail right on the head.
Specialy the part about JediMark not enableing the CMS 50i yet or bluetooth and wifi. who cares if the machines don't offer it he should be able to work around such minor issues as that.
And the part about EDUCATION, I didn't think that was allowed in colleges our universities unless it specifically addresses Gendoer or Race issues.

The MAIN thing that needs to be addressed is who OWNS and CONTROLS all the data about MY BODY. I believe I should own and control it. the medical mafia think they do. The govenment wants to take over and be totaly in charge. I read a statement today attributed to the designer of Obamcare - no one should be seeking medical or other care in an atempt to extend their life beyond the age of 75.
Once everyone agrees it is my body and my data and I AM THE CUSTOMER, NOT THE DME OR DOCTOR OR INSURANCE COMPANY, then maybe the manufacturers will start to shape up.

NC has started something here. If his team could take the responses to the manufacturers of our equipment and to congress, maybe they could actually make a difference.

[Semily]

Funny, I typed up all of my answers to these questions before I read everyone else's responses. And it seems that there are a lot of similar feelings. I agree that the team needs to try CPAP therapy for themselves. And I'm thinking that with the high incidence of undiagnosed OSA, chances are at least one of them need it anyway. Sleep studies all around!!

But for what it's worth, here's my response:

What thoughts do you have?

I think that a person's attitude and willingness to adapt to change is probably the first variable in level of compliance. I am generally open to change and am very interested in doing what I can to improve my health, so I accepted pretty quickly that I needed therapy and would do what it takes to make it work.

I also think that education and availability of information could be greatly improved. In the beginning of trying to figure out what therapy was all about, it was liking walking in the dark. None of the healthcare professionals I was dealing with were very forthcoming with information, and I've had to work extremely hard to gather the information I have. I'm not sure why there is so much secrecy in this industry, but I'm sure it doesn't help the issue of compliance.

Is it just a comfort issue with the machine?

Comfort has a lot to do with it, but that encompasses a lot of different things...fit of the mask, sleeping position, etc. I am finding that I seem to have mild claustrophobia. Most of the time it's not bad enough to keep me from being compliant, but I occasionally find I wake up in the middle of the night and have to remove the mask. I am sure that people with more severe anxiety or issues with claustrophobia would really struggle or even just give up.

What could a device do to increase compliance?

My machine has the capability to transmit data via bluetooth, IF I invest in a bluetooth adapter. I'd like to see that as an included feature in the machine, to allow for easier tracking of my progress from a mobile device.

What could a mobile application do to increase compliance?

To go along with better wireless capabilities, I would love to see a mobile integration with the Sleepyhead software. It's a great program and has been extremely helpful in monitoring my progress. It would be nice to be able to use it from my iPad.

Could a sleep "score" increase compliance?

I don't think so. I think there is already somewhat of a score given during the sleep study. And the AHI is already a pretty good marker in efficacy of treatment.

Could making use of the CPAP and getting a good night's sleep a game/competition help?

Not for me. My desire to sleep better is rooted in my desire to FEEL better. How my compliance compares with that of others is really of no interest to me.

[angeltink]

Hello all,

I'm working on a school project at North Carolina State University. Our team is working to address CPAP compliance and we're wondering if any of your would be willing to share why you struggle with compliance.

What thoughts do you have?
Is it just a comfort issue with the machine?
What could a device do to increase compliance?
What could a mobile application do to increase compliance?
Could a sleep "score" increase compliance?
Could making use of the CPAP and getting a good night's sleep a game/competition help?

Thanks for your input!

-Gavin S.

There is already and app on the market they had a pamphlet about it in the DME office. There are already goals you can set up to get to in order to be compliant in the CPAP companies website that is like a competition to reach your goal. The machine is not a comfort issue the mask is and if you want to make the machines better then there should be no way to lock out information to the user so only the DME knows the trick to getting the info needed, that would supply a sleep score when compaired to each day.