Issues with Compliance

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
NCSUStudent

Issues with Compliance

Post by NCSUStudent » Mon Sep 22, 2014 7:01 pm

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.

tyroneshoes2

Re: Issues with Compliance

Post by tyroneshoes2 » Mon Sep 22, 2014 7:10 pm

I have two issues.

I am just two weeks in, and I have made peace with the mask and the whole setup, so I do not feel like I am doing something I don't like or don't want to do; I am completely on board. But I have been known to fall asleep in front of the TV on occasion, so 3 nights of the last two weeks I fell asleep for 3 or 4 hours without the mask, waked to pee about 2:00, and then return and put on the mask for about 4 -5 hours.

I would love to find a way to stop doing that; I am considering setting an alarm that repeats every hour while watching TV (iPhone count-down timer).

The other thing is that I think I actually miss the messed-up sleep; I feel that sometimes I just would like to sleep without the apparatus, even though I have no problem with it. It seems like I miss that half-sleep state I have been in for decades for some reason. And I hope that is temporary and I get used to preferring a good night's sleep, like I have been getting lately (when I don't fall asleep first). I wish I could explain that better, but I don't even understand it well enough myself.

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Re: Issues with Compliance

Post by chunkyfrog » Mon Sep 22, 2014 7:59 pm

The problem is primarily one of logistics, since many of the needed tools do exist; but they do not make it to the patient.
--First, a mask that fits and is comfortable is crucial;
--Second, a machine that is flexible, quiet, and provides efficacy feedback--hours of use only does NOT cut it
--Third, the culture of secrecy is nothing but destructive--information is essential;
---and nobody has a right to hide it from those who need to use it.

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Re: Issues with Compliance

Post by Wulfman... » Mon Sep 22, 2014 8:23 pm

NCSUStudent wrote: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.
I get the feeling that nobody on your team actually uses XPAP (CPAP/APAP/Bi-PAP) therapy. If they did, you wouldn't be here asking these questions.......some of which are a little strange.

Maybe it would be a good idea if you all rented some fully-data-capable machines and masks and tried it out for yourselves.

There's ONE word that would increase compliance with this therapy......"EDUCATION"......about the condition, about the therapy, about the equipment and about the consequences of not using it.
Having fully data-capable machines and the software to interpret the data is another imperative which dovetails into the education concept.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
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SleepyEyes21
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Re: Issues with Compliance

Post by SleepyEyes21 » Mon Sep 22, 2014 9:54 pm

Wulfman... wrote:
NCSUStudent wrote: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.
I get the feeling that nobody on your team actually uses XPAP (CPAP/APAP/Bi-PAP) therapy. If they did, you wouldn't be here asking these questions.......some of which are a little strange.

Maybe it would be a good idea if you all rented some fully-data-capable machines and masks and tried it out for yourselves.

There's ONE word that would increase compliance with this therapy......"EDUCATION"......about the condition, about the therapy, about the equipment and about the consequences of not using it.
Having fully data-capable machines and the software to interpret the data is another imperative which dovetails into the education concept.


Den

.
Den - I think the OP is trying to figure out how to make an app that is relevant for CPAP users, so he/ she can make $$; I've seen this kind of thing before. Notice the questions about 'mobile application,' and using gaming and "scores" for motivation purposes. If this were a valid study, the OP would have registered so anyone could contact him/ her at the college named. Also - any valid studies done by college students for educational use involve full disclosure information about the purpose and risks of the study ahead of time, and requires participants to sign that they are giving consent to said study.

IMO, creating an app that involves gaming or competition with others to remain compliant with PAP therapy would be just about as effective as making a similar app for diabetes treatment, or any other serious/ life-threatening disorder.

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Re: Issues with Compliance

Post by Wulfman... » Mon Sep 22, 2014 10:01 pm

SleepyEyes21 wrote:
Wulfman... wrote:
NCSUStudent wrote: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.
I get the feeling that nobody on your team actually uses XPAP (CPAP/APAP/Bi-PAP) therapy. If they did, you wouldn't be here asking these questions.......some of which are a little strange.

Maybe it would be a good idea if you all rented some fully-data-capable machines and masks and tried it out for yourselves.

There's ONE word that would increase compliance with this therapy......"EDUCATION"......about the condition, about the therapy, about the equipment and about the consequences of not using it.
Having fully data-capable machines and the software to interpret the data is another imperative which dovetails into the education concept.


Den

.
Den - I think the OP is trying to figure out how to make an app that is relevant for CPAP users, so he/ she can make $$; I've seen this kind of thing before. Notice the questions about 'mobile application,' and using gaming and "scores" for motivation purposes. If this were a valid study, the OP would have registered so anyone could contact him/ her at the college named. Also - any valid studies done by college students for educational use involve full disclosure information about the purpose and risks of the study ahead of time, and requires participants to sign that they are giving consent to said study.

IMO, creating an app that involves gaming or competition with others to remain compliant with PAP therapy would be just about as effective as making a similar app for diabetes treatment, or any other serious/ life-threatening disorder.
I actually figured that out when I first read it. Consequently, I was taking their topic in a different direction.
"Education".......for college students? What a novel idea.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

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SleepyEyes21
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Re: Issues with Compliance

Post by SleepyEyes21 » Mon Sep 22, 2014 10:07 pm

Wulfman... wrote:
SleepyEyes21 wrote:
Wulfman... wrote:
NCSUStudent wrote: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.
I get the feeling that nobody on your team actually uses XPAP (CPAP/APAP/Bi-PAP) therapy. If they did, you wouldn't be here asking these questions.......some of which are a little strange.

Maybe it would be a good idea if you all rented some fully-data-capable machines and masks and tried it out for yourselves.

There's ONE word that would increase compliance with this therapy......"EDUCATION"......about the condition, about the therapy, about the equipment and about the consequences of not using it.
Having fully data-capable machines and the software to interpret the data is another imperative which dovetails into the education concept.


Den

.
Den - I think the OP is trying to figure out how to make an app that is relevant for CPAP users, so he/ she can make $$; I've seen this kind of thing before. Notice the questions about 'mobile application,' and using gaming and "scores" for motivation purposes. If this were a valid study, the OP would have registered so anyone could contact him/ her at the college named. Also - any valid studies done by college students for educational use involve full disclosure information about the purpose and risks of the study ahead of time, and requires participants to sign that they are giving consent to said study.

IMO, creating an app that involves gaming or competition with others to remain compliant with PAP therapy would be just about as effective as making a similar app for diabetes treatment, or any other serious/ life-threatening disorder.
I actually figured that out when I first read it. Consequently, I was taking their topic in a different direction.
"Education".......for college students? What a novel idea.


Den

.
Right??!! - Go Figure

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Re: Issues with Compliance

Post by SleepGuy » Mon Sep 22, 2014 10:18 pm

NCSUStudent wrote: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.
Gavin, I had all but given up on cpap after a year of trying.

Then one night I was experimenting with essential oils (aromatics) and experienced a miracle: my first full night's sleep in years.

From that morning to today I have been a man on a mission to help with adherence / compliance / desensitization. My Pur-Sleep product has sold thousands of units and counting, with overwhelmingly positive feedback.

After years of working on understanding why and how, I have prepared this explainer video: https://www.youtube.com/watch?v=U5ke4utEUpo

Take a look and feel free to contact me at bret@pur-sleep.com.

I also have a white paper that summarizes medical literature on this topic, concluding that aromatics are effective: for example, pediatric anesthesiologists figured out long ago how to get a kid to overcome mask anxiety--make it smell like bubble gum or Dr Pepper. Cognitive distraction + calming down the limbic system at the same time.

Bret

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Re: Issues with Compliance

Post by SleepyEyes21 » Mon Sep 22, 2014 10:53 pm

SleepGuy wrote:
NCSUStudent wrote: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.
Gavin, I had all but given up on cpap after a year of trying.

Then one night I was experimenting with essential oils (aromatics) and experienced a miracle: my first full night's sleep in years.

From that morning to today I have been a man on a mission to help with adherence / compliance / desensitization. My Pur-Sleep product has sold thousands of units and counting, with overwhelmingly positive feedback.

After years of working on understanding why and how, I have prepared this explainer video: https://www.youtube.com/watch?v=U5ke4utEUpo

Take a look and feel free to contact me at bret@pur-sleep.com.

I also have a white paper that summarizes medical literature on this topic, concluding that aromatics are effective: for example, pediatric anesthesiologists figured out long ago how to get a kid to overcome mask anxiety--make it smell like bubble gum or Dr Pepper. Cognitive distraction + calming down the limbic system at the same time.

Bret
Hi Bret - where can I find information and product to order for your aromatherapies for cpap? Do you have your own website or just sell through major retailers like Amazon?

I sent you a private email a day or two ago about your Pur-Sleep pillow trial.

Thank you!

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Re: Issues with Compliance

Post by SleepGuy » Mon Sep 22, 2014 11:01 pm

SleepyEyes21 wrote:Hi Bret - where can I find information and product to order for your aromatherapies for cpap? Do you have your own website or just sell through major retailers like Amazon?

I sent you a private email a day or two ago about your Pur-Sleep pillow trial.

Thank you!
It's available on cpap.com. I also have a website but would really prefer that you get stuff through cpap.com since I am not on here trying to divert sales. They have been good to me. The product is also available on Amazon from at least one vendor as well as other online DMEs. I would steer you to cpap.com though.

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Re: Issues with Compliance

Post by SleepyEyes21 » Mon Sep 22, 2014 11:09 pm

SleepGuy wrote:
SleepyEyes21 wrote:Hi Bret - where can I find information and product to order for your aromatherapies for cpap? Do you have your own website or just sell through major retailers like Amazon?

I sent you a private email a day or two ago about your Pur-Sleep pillow trial.

Thank you!
It's available on cpap.com. I also have a website but would really prefer that you get stuff through cpap.com since I am not on here trying to divert sales. They have been good to me. The product is also available on Amazon from at least one vendor as well as other online DMEs. I would steer you to cpap.com though.
Thanks Bret - I will look for them there

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Re: Issues with Compliance

Post by NCSUStudent » Tue Sep 23, 2014 4:49 am

SleepyEyes21 wrote:
Wulfman... wrote:
NCSUStudent wrote: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.
I get the feeling that nobody on your team actually uses XPAP (CPAP/APAP/Bi-PAP) therapy. If they did, you wouldn't be here asking these questions.......some of which are a little strange.

Maybe it would be a good idea if you all rented some fully-data-capable machines and masks and tried it out for yourselves.

There's ONE word that would increase compliance with this therapy......"EDUCATION"......about the condition, about the therapy, about the equipment and about the consequences of not using it.
Having fully data-capable machines and the software to interpret the data is another imperative which dovetails into the education concept.


Den

.
Den - I think the OP is trying to figure out how to make an app that is relevant for CPAP users, so he/ she can make $$; I've seen this kind of thing before. Notice the questions about 'mobile application,' and using gaming and "scores" for motivation purposes. If this were a valid study, the OP would have registered so anyone could contact him/ her at the college named. Also - any valid studies done by college students for educational use involve full disclosure information about the purpose and risks of the study ahead of time, and requires participants to sign that they are giving consent to said study.

IMO, creating an app that involves gaming or competition with others to remain compliant with PAP therapy would be just about as effective as making a similar app for diabetes treatment, or any other serious/ life-threatening disorder.
1) registered - please reach out if you would like. Apologies for not doing that earlier.
2) no one on the team uses a CPAP - you are correct. We have interviewed a few users and providers to date.
3) the team is an interdisciplinary team. I am an MBA student and the course (for me) is MBA 555 - Product Introduction and Development.

I did my best to ask questions without tainting results. Our project, at this time, is trying to address the section of the market where CPAP use isn't clearly providing a "benefit". We realize that there are people who need it and clearly see the difference / benefits from use. This isn't intended for them - it's for the people who use it and think "meh does this thing really work? I'm still tired!"

Thanks again for your help.

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Re: Issues with Compliance

Post by chunkyfrog » Tue Sep 23, 2014 5:13 am

Oh, you are not familiar with Sleepyhead? Read more on this forum about it.
Whatever app you write/market, know that the better mousetrap has already been built;
but it is free, and underground, because the medical Mafia is threatened by patients who
are in control of their own therapy.
This is what really works, and until the paradigm of patients as sheep changes,
no silly little game will matter one whit except as a possible income source for
those willing to exploit it at the expense of their conscience, should they have one.
Edit: I didn't get my usual amount of sleep because hubby had to chase a pair of
two-legged skunks out of the garden--no wonder the tomatoes and peppers were scarce!
Now the world gets to deal with a venomous frog!

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Re: Issues with Compliance

Post by Krelvin » Tue Sep 23, 2014 5:28 am

NCSUStudent wrote:1) registered - please reach out if you would like. Apologies for not doing that earlier.
2) no one on the team uses a CPAP - you are correct. We have interviewed a few users and providers to date.
3) the team is an interdisciplinary team. I am an MBA student and the course (for me) is MBA 555 - Product Introduction and Development.

I did my best to ask questions without tainting results. Our project, at this time, is trying to address the section of the market where CPAP use isn't clearly providing a "benefit". We realize that there are people who need it and clearly see the difference / benefits from use. This isn't intended for them - it's for the people who use it and think "meh does this thing really work? I'm still tired!"

Thanks again for your help.
Then you are pretty much asking the wrong people. Most people here advocate the use of CPAP or come here on how to make it work because they know they need it.

Not having anyone on your team that uses CPAP themselves is a large disadvantage.

The only application which is of much use is one that can view the data from the machine and provide details on what was found so that a user can attempt to see what is effecting their sleep and perhaps link it to a cause for both positive and negative sleep. Making a game out of it seems silly. Making it a competition doesn't make sense either since the sleep issues are specific to the user not a group.
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Re: Issues with Compliance

Post by NCSUStudent » Tue Sep 23, 2014 6:10 am

Krelvin

Thanks for the feedback. I was hoping to understand the cause of compliance issue and then the actions taken to overcome them. It seems support groups like this and access to data is the primary driver towards compliance.