What would cause you to become compliant?

[Guest]

Hello: I'm curious as to what healthcare providers can realistically do to "make" patients use their CPAP devices. I mean everyone: doctors, DMEs, internet retailers, friends...

Recently CPAP.com even came on board with their new outreach program in an attempt to optimize compliance among its patients. This is a good thing as well.

My question: Is it realistic to assume that phone calls, mailings, etc., can lead to increased compliance? What about emails? Obviously it's better than nothing, but what is the magic bullet? Scare tactics? (reference the recent heart story).

How can you make someone use their CPAP? Support forums like this? A combination of everything?!?!?! Thank you.

[DreamStalker]

Scare tactics ... actually plain old "reality check" tactics should work fine followed by an introduction to the heros of this forum.

- roberto

[Guest]

I think the residual revenue stream from replacement supplies SHOULD motivate a DME to do whatever it takes to ensure a high compliance.

That alone.....

[jum001]

a comfortable mask would certainly help.

[linda b]

One thing doctors could and should do is help their patients get educated about sleep apnea (or any other health issue for that matter) by providing reading materials and a list of good sites on the internet. SOOOOOO many people look to the internet for information, but if you are not really computer savvy, it might be hard to find the good sites.

The more informed people are, the better their decisions.

And, yes, scare tactics are important, too. I don't think very many people really appreciate the ramifications to the rest of their body that not sleeping well and not getting sufficient oxygen can cause. So, yes, tell them about Reggie Jackson and anyone else famous that is a sleep apnea sufferer. Have them read articles like the one in another post today.

And yes, the doctor and/or the DME SHOULD check on the patient a couple of weeks after he/she receives the equipment to make sure everything is going okay, offer help if it is not, etc. And then again in a month if changes are made. I don't expect the doctor and/or DME to be a my beck and call, but they should do a little follow up.

[cpapjack]

So, yes, tell them about Reggie Jackson and anyone else famous that is a sleep apnea sufferer.

It was Reggie White actually, not Reggie Jackson.

[linda b]

You are absolutely right!! And I really kinew that, especially since he was a good ol' Univ. of Tennessee football star.

[NHBear]

I think the biggest help is forums like these....Seriously. I was started on CPAP 6 years ago and tried using it faithfully for 6 months, always ripping the mask off in the middle of the night, never knowing when it came off. The DME tried a couple different masks, and a chin strap, but not too helpful. So, I gave up.
No one ever checked back with me...Not the MD, not the DME. I eventually pursued suregry (UPPP), which did nothing.

So I crawled under a rock (I am a health professional so I SHOULD know better...we are the worst offenders.....). Five years later, I am worried about my health, my fatigue, my general lousy existence, and pursued again. All went well, but most importantly was the help and incredible amount of knowledge this forum offers. Every person is different in how they behave, how they tolerate, and anatomically how they use a mask, or whatever. This is an amazing resource. My DME mentioned this site, and I am going to speak with my colleagues in the sleep lab here to let them know of these resources.
I have been on for 2 weeks now, but have never ripped it off, and sleep like a baby. Yes, I have a few issues, but this forum addresses them all, and allows me to make the best choices for myself.At the time before I am sure I was battling my air, and now I have a C-flex. Thanks again, and my apologies for the wordiness.

[Guest]

good responses! Please, let's make sure we understand that these forums are free and don't have anything directly to do with purchases from any one company, prices, etc.

So you think it's the Community aspect of OSA that is helping you be compliant? That's great! This free forum is kind of like the AWAKE groups in digital format. Patients have always enjoyed mutual support groups.

[wahooker]

Well, one thing that would help would be better mask fitting.

Instead of just handing it to them in a bag they should

Help them figure out what maskes are going to fit their style face, and have a few to try on.
Help Adjust the straps
Make sure the user is wearing it right
have a place for them to lay down in the position they normally sleep in
Test it at the prescribed pressure/range of pressures

[Wulfman]

For me, just finding out what I had and the fact that it was easily treatable was enough to want to be compliant. I was tired of being tired all the time. I was bound and determined to get my health back. I browsed and read this forum for a good 2 or 3 months before I finally registered. I've never really had any "problems" that I felt I needed help with, but it was nice to be able to read about what everyone else's experiences were and to know that one's own experiences are not unique. I think there might be a certain amount of peer pressure on a forum that makes a person think "Well, if that person can do it, so can I!".......which you wouldn't have if you only dealt one-on-one with a B&M DME office (and didn't seek out the forums on the Internet).
Having a machine and software to monitor my therapy is also a HUGE incentive to be compliant, too.
Also, having a sleep doctor who was a jerk, helped greatly.

Den

[MandoJohnny]

I am 100% compliant after nearly 4 months and I am not generally a big medical compliance patient. I can be kind of stubborn and don't trust a lot of docs, so that success is kind of surprising, even to me. I will tell you what helped me:

1. A doctor who really inspired confidence. He just seemed like he knew what he was doing, cared about me, listened and came up with a good plan. What could a DME do about that? Only work with good docs, set up seminars with docs on how to inspire confidence in patients. Also, he had no problem with me doing my own setting changes and he doesn't mind or minimize questions I learn to ask based on message boards like this one.

2. The sleep lab was great, very professional and comfortable. They gave me a short course on sleep disorders and sleep studies while they were wiring me up. I really felt like they knew what they were doing and made me feel comfortable so I could sleep.

3. The DME is affiliated with the lab. They got a guy out to get me started on CPAP right away. The RT they sent left a lot to be desired, but I overcame that. I do think having the lab, the DME and the doc in sync was very helpful, regardless of thier business relationship. It inspired confidence.

4. I have had issues since, both medical and equipment. The customer service on the part of both my doc and the DME (except for that one RT) has been phenomenal. That has helped. I get called back the same day, always, they always really listen and I get good advice and/or action, depending on the issue.

5. I got issued a good machine and mask, right off the bat. People can quibble whether or not it is thier favorite, but it is good gear.

6. This site and other sites have been really helpful. DMEs should advertise these sites.

7. I also think support/information groups could be effective. There was one I was in when learning to deal with asthma that was great. It was a little bit like a live version of a message board, except they would have healthcare pros come in to speak and answer questions.

[JCraig]

Why would anyone need anything other than the fact that they'll LOSE THE SYMPTOMS OF OSA if they use xPAP? I just don't understand.

[Snoozin' Bluezzz]

Well, one thing that would help would be better mask fitting.

Instead of just handing it to them in a bag they should

Help them figure out what maskes are going to fit their style face, and have a few to try on.
Help Adjust the straps
Make sure the user is wearing it right
have a place for them to lay down in the position they normally sleep in
Test it at the prescribed pressure/range of pressures

I second this one to the nth degree!!!

I got < 5 minutes with a tech and the cheapest mask they had. I rec'd absolutely no briefing on the problems I might expect and what alternatives there might be to deal with them. I had a terrible struggle with claustrophobia, leaks and sleeplessness the next two nights, gave up and went the next 1.5 years before starting back on the path to compliance. I finally got an appointment in the sleep lab for "mask de-sensitization" which was not very thorough but better than a sharp stick in the eye. It just so happened that out of the three he gave me to try one was the Swift and I took to it immediately. If he had not offered me the Swift I still might be struggling. Every other interface I have tried has been usable for short periods of time but caused me difficulties over longer periods - headaches, rosacea flareups, sores, etc.


So, I would think a relatively in depth communications by health care providers/supporters of the potential complexities of coming to grips with the xPAP experience and different ways to overcome these difficulties would go a long way to helping.

Also, I think it would help if health care providers had tried to use an xPAP and interface before counseling folks on what is doable or not.

It would be useful for folks in the business to have a much better grasp of the ins and outs of OSA therapy. Too many do not seem to know what machines there are and how they differ, what interfaces there are and how they differ, what other accessories and aids there are.

Another thing would be for health care providers/supporters to ask precise, specific and leading questions when doing follow-up i.e.:

• * How long are you using it each night?
  * If you are not using it at all or less than a full night why?
  * What precisely are you struggling with?
  * Do you know if you are having leaks?
  * Is your mouth dry?
  * Are your nasal passages dry, crusting or bleeding?
  * If you have a humidifier are you using it and how much water is it using?

instead of a casual message on my machine - "how's it going?". I would also make sure I actually spoke to the patient.

And then I would steer them to this, and other, forum/s for help in how to solve them. Basically my experience has been one of ignorant bliss to nonchalant semi-follow up.


David

[Bookbear]

I believe that patient comfort (esp. the mask) makes a huge difference in compliance rates. I am not usually a fan of scare tactics, but patients DO need to understand the life-threatening aspects of OSA. Not all do, and I wonder how aggressive doctors are in their counseling of patients. Certaily, I've never received a call from the dme, doctor, or the PA checking on my compliance or progress. The follow-up appointment is scheduled for 6 months from when I got the machine. The lack of concern on their part could well be interpreted by a patient to mean that this is really not all that important.

So.....what would help patient compliance?

THIS FORUM! EVERY apnea patient should be told about this forum as part of their diagnoses, and any local support groups that might exist within a reasonable distance from the patient's home (AWAKE, etc.)

I am 100% compliant, have been since Day 3; but I literally do not know what I would have done without the knowledge and suggestions of people here. The mask I was prescribed was intolerable, there was no way I could have used it . Without this forum, I would been haunting the Dr. begging for relief. Bear in mind I was/am totally motivated, my dad died of this, and I knew I was headed down the same road. Suggestions here lead me to a different type of interface (Breeze) and what a world of difference that made.