"lecture"

[RDawkinsPhDMPH]

Several points:

1) I have been asked to give a presentation at the state sleep meeting on compliance programs. Of course, I will talk about our program but I also wanted to get any suggestions from the forum members. The audience will be mostly sleep techs from the labs and RRTs or sleep techs from DMEs, and will include some sleep docs. What did your sleep doc, sleep lab, or DME do that was particularly helpful or unhelpful? I have read the mostly excellent posts related to Montana user's DME lecture.

2) Also, I managed to accidently delete the mailing list from my website. Anyone who purchased my ebook on tolerance and still wants to get any updates by email can go to the website and resubscribe without repurchasing the book. Sorry.

Thanks.

[Wulfman]

Tell them to NOT prescribe (or give out) any machine other than ones that are fully data-capable.
Tell them to do whatever it takes to get the applicable software to the patients.
Tell them to do whatever it takes to get the patients/users a mask that works for them.
Try to get the patients/users as much involved in and as knowledgeable about their therapy as much as possible.
In other words, don't treat em like "mushrooms".
They should NEVER lie to the customers. If you can't blind them with brilliance, don't baffle them with bullshit.
Make sure the payment schedules and accounting are plainly clear and understandable to the customers (patients/users).
Make sure the patients/users get copies of their sleep studies and the originals of their prescription.

And, last but not least........direct them HERE.


Den

[HoseCrusher]

One very helpful thing is to have some experience with the equipment. My RT tries out all the different machines and masks they offer, and had good initial information because of his experience with the different equipment.

Along those lines, you may want to consider having a DME bring enough masks and hoses for everyone to try one out. Have everyone put a mask on and connect the hose. Wear it for about 10 minutes, then take them off and have them examine each other for pressure marks. Then you can discuss how to keep those marks from happening in the first place with instructions on how to eliminate leaks without cinching the straps down to the point where you cause other problems. I would also suggest that you stick to full face masks. Given the choice of a Swift FX and a full face mask, it would be very easy to adjust the Swift FX. The full face mask offers more of a challenge. If you take a few steps in the "other persons" shoes, you may be able to better help them comply to the treatment.

Another thing is to be able to direct people to places where peer help is available. Chatting with someone else that is undergoing xPAP therapy can help with emotional support, and ideas to improve comfort can bounce back and forth.

[archangle]

Get the billing straight. I know dealing with insurance is a painful affair. If the final answer from the insurance company is different from what you thought it would be, be sympathetic with the user, no matter how infuriating it is to you to deal with the insurance company. I'm not saying to make up the difference, but don't act like you don't care.

If at all possible, try not to bill more than the insurance company will allow on the final bill if you're a PPO and won't get paid anyway. Try not to bill for multiple procedures if the insurance company is going to disallow one and you're not going to get paid in the end. Nothing says that you're a scam artist to your customer more than billing items you know aren't going to be paid.

I agree with the "no mushroom" idea. Nothing irritates me more than someone who keeps "medical secret" knowledge from me. I'd be much more likely to give up on CPAP entirely if they treat me like a mushroom. Or switch DME's.

Don't act like you're better than the patient. Too many people in the medical system think they're little tin gods. You may know a lot more about the subject than the patient, but don't forget he's the one paying your bills. The customers can always fire you. Also, an informed patient has access to a lot more information than you do. The patient knows how he feels when he wakes up, whether he wakes up choking, when he feels better, etc. A lot of the treatment requires the patient to know what to do and to be motivated to actually do it. You need to be partners in the patient's health. Have a master/apprentice relationship, not master/slave relationship.

I agree on letting the patient know how to make adjustments, but I realize that may be a hard sell to DME's, and may present some problems with the doctor or prescription.

[Slartybartfast]

How 'bout getting really cutting edge and avant-garde and suggesting the traditional Doctor/DME/Patient paradigm is passe.

Enlist the patient's participation in their therapy much as diabetics have done with such success. Invest in a cheap recording pulse oximeter in order to verify that the prescribed therapy is keeping overnight blood oxygen levels near the optimum. And advocate the use of autoPAPs over CPAPs where appropriate, with software available, again, where appropriate. Automatic machines and software aren't appropriate for everyone, but neither is daily blood glucose testing appropriate for all diabetics. The parallels between diabetics taking charge of their part of their therapy and xPAP patients doing likewise are evident.

My RN-wife says any doctor worth his parking stipend should be thrilled to have his patient meeting him halfway in educating himself and monitoring his own therapy. I found that to be true with my Sleep Doc. ** The fact that such a relationship is the excption rather than the rule indicates that there is room for improvement. Educate the patient and the doctor about the benefits of patient involvement in their therapy, offer support to patients who might be struggling with compliance, reducing the doctor's workload, and suggest that perhaps the DME vendors and equipment suppliers might step up their visibility to the patients in terms of offering more educational resources and support.

**viewtopic/p584719/viewtopic.php?f=1&t=6 ... 02#p564777

[xenablue]

Actually NO ONE was helpful to me in the medical field - the DME tried to give me a bum steer and turn me into a mushroom, but I fought and won. My neurologist is ecstatic that I can, and want to take an active part in my care, but she is puzzled at how I learned so much within a month of dx. Every single thing I've learned about XPAP is from this forum and the wonderful people here.

My DME RT gave me ONE mask to try - his NEW assistant tried to have him let me try a few, but he wouldn't have it - told me this was the mask that suited me best - I HATED IT the second he fitted it. I put up with the mask until I couldn't stand it any longer - it made my claustrophobic and gave me a headache as the piece on my forehead pressed on my sinuses.

As I'd already read some here, I asked him to show me how I could find my stats and/or where could I obtain the software to download it to my computer. His response - "you don't need to know any stats, so don't worry about it".

Within 3 days my tubing tore - the DME refused to replace it.

They didn't bother to send my neurologist any reports so that she could discuss this with me at our one month appointment. Luckily by that time I had the software and printed out everything she needed.

She was furious with them and I've since changed DME provider.

PLEASE!!! Tell the people you speak to that knowledge is power, the power for us, the patients to take an active role in our care, and therefore succeed at XPAP treatment because we actually know what questions to ask.
Obviously there are those who do whatever their medical team tells them and they seek no further information on their care, or ways to improve it. It should be up to the medical community to find out if a patient WANTS to be an active participant and learn all they can, not be so insecure that they force us to not even KNOW to question what they are dumping on us.

Good luck with the presentation, I look forward to your feedback from the participants.

Cheers,
xena

[robysue]

Seconding absolutely everything Wulfman said.

And it's important enough to say these three things a second time explicitly:

• Give EVERY patient a full data machine and make sure EVERY patient knows how to access the data on the machine's LCD.
  
  Help get the software into the hands of patients. Not all patients will want it or use it, but all patients *should* have access to it.
  
  Make sure the patients/users get copies of their sleep studies and the originals of their prescription

In addition to what Wulfman said, you asked, "What did your sleep doc, sleep lab, or DME do that was particularly helpful or unhelpful?"

Unhelpful:
Hands down the most unhelpful thing that has happened to me during the last seven months was for my sleep doctor to completely brush off my concerns about adjustment issues and my desire for a full data machine. Essentially, the conversation went something like this:

• Me: I've been reading up on OSA and I'd like a full data machine since I'm worried I'll have trouble adjusting and seeing the data will help motivate me to stick with using the CPAP when it's not going so well.
  
  Doc: You don't need a full data machine. And most people adjust without any problems.
  
  Me: I've been reading up on OSA, and you tell me I have moderate apnea. I have no daytime symptoms and I'm worried CPAP is going to trigger my insomnia and that I'll have real trouble adjusting.
  
  Doc: Don't worry about adjustment problems. Most people adapt without any problems in a couple of weeks.
  
  Me: I'd really like a full data machine. And I am concerned about adjustment problems. I often get insomnia when I'm under stress, but I don't like taking sleeping medication. What do I do if I have real problems adjusting and I can't sleep with the machine?
  
  Doc: Don't worry. You'll start feeling better in a couple of weeks.

To really understand the impact of this conversation on me, you have to understand: At the time of my diagnosis I had no daytime OSA symptoms, no EDS, and generally felt "ok" but not great when I woke up in the morning. Within a week of starting CPAP, I proceeded to develop serious CPAP-related insomnia and extremely serious problems with daytime functioning and other serious adjustment issues. By the end of two months on CPAP, the doctor's PA convinced the doctor to authorize a switch to bi-level. And at the end of 3 months of therapy, I finally started doing the serious work on the insomnia that I may have been more willing to start earlier if I'd not felt like I'd been told not to worry about it. It's now six and a half months since I started xPAP and only now am I really beginning to feel as well (or slightly better) than I did last summer before I was diagnosed---partly because it took me four solid months to learn how to tolerate sleeping with the machine and it's taken three months of hard work on taming the insomnia so that I can actually benefit from using the machine. So tops on my list of what NOT to do is ignore what the patient actually is telling you about their concerns, fears, and worries about starting CPAP and blithely assure him/her that all will be well in a few short weeks.

I'd also caution any tech, RRT, sleep doc or other medical professional who is involved in prescribing/providing CPAP machines and dealing with CPAP compliance issues but does NOT use a CPAP on a nightly bases to be keenly aware of the vocabulary and tone of their voice when they are talking to newly diagnosed OSA patients or OSA patients with compliance issues: A condescending tone or vocabulary such as CPAP is "not that hard" to get used to and "not that bad" once you get used to it coming from a non-hose head can both demoralize and anger an OSA patient---particularly one who is still coming to grips with the full implications of the diagnosis. And telling a patient with compliance problems or who is feeling worse instead of better on CPAP that "it just takes time" is just down right wrong---particularly if you (the doc, RRT, or tech) have no nightly data to verify that therapy is actually effective in terms of leak control and AHI numbers. It's hard to stay compliant when you (the patient) leave the office shaking your head and saying to yourself, "He/she (the doc, tech, RRT, etc) just doesn't understand how hard it is at 3 o'clock in the morning when I just can't stand this thing on my nose" or "He/she (the doc, tech RRT, etc) just doesn't understand how dysfunctional I've become at work since starting CPAP."

Finally, don't advertise "patient support groups" if you don't actually have them. That's another current burr in my saddle right now: I need a face-to-face patient support group right now; the public relations materials about the practice left around the sleep doctor's office says to ask them about patient support groups, but when I did, the answer turned out to be: We don't know of a CPAP users support group in WNY after all.

Helpful:
My DME who does set all their customers up with full data APAPs by default. Has made it much easier on me when the PA in the sleep doctor's office has wanted me to try APAP and Auto BiPAP mode. No waiting for a temporary machine. No dealing with storing my regular machine. Just bring the machine in so the tech can officially change it

The PA in the doctor's office has been exceptionally helpful because she has listened and taken notes about my various complaints. And has presented me with real options on how to address a number of adjustment to CPAP issues, including the CPAP-induced insomnia. Some of which I've agreed to try and others I haven't. She's respected my choices and I feel as if she does value the fact that I'm a patient who has managed to do a reasonable job of educating myself about my condition and its treatment and that my questions (and occasional ideas) are important and thoughtful and (most of the time) deserve a real answer. So stress the need to respect your OSA patients as full persons and not just as throats that are prone to collapsing during sleep.

[Janknitz]

To sum up what everyone has already said, an informed and engaged patient is a compliant one.

Mask and machine comfort are very important to success, and patients need followup and support, not just compliance checks.

Some people need more information than others to understand and participate in their therapy, but at the very least, a data capable machine ensures that everyone (including the DME and the doctor) will have the information needed to problem solve if there are issues.

[archangle]

Be sure the patient feels welcome to call you with problems. Maybe even ask the patient if he minds you calling him after a few days and ask him how it's going. Nothing like a little personal contact to make the paying customer keep coming back. Of course, you run the risk of a patient who calls you all the time. You could probably dodge the too chatty patient by telling him to bring his machine in so you can check the machine and data.

[RDawkinsPhDMPH]

Thank you for the responses so far. You have given me several good points to make, I particularly like the analogy to diabetic education and will use that. Part of the reason I was asked to do the presentation is to address the value of data capable machines as we order only data capable, APAP machines with modems, so you have my agreement on that issue.

And thanks, robysue, for the mention of support groups that don't really exist. I just walked out of our April meeting! It never occurred to me that someone would just "pretend" to have a support group. I will be sure to address the importance of support groups actually meeting.

[PST]

Part of the reason I was asked to do the presentation is to address the value of data capable machines as we order only data capable, APAP machines with modems, so you have my agreement on that issue.

Modems? There's a word I haven't seen in a long time. Are these machines from which the patient can download his data, are is information only transmitted for some provider to review? Much of the reason folks here are so keen on having data available is that we like to see day to day how we are doing. If I do something different with my mask, do my leaks improve or get worse? If I start going to bed earlier, does it change my AHI? The motivation for compliance that exists when we have immediate feedback and some control over trying to make treatment better is not generated just by knowing that a tech somewhere is monitoring our results.

[bayourest]

I could not add to the points that have already been articulated except to suggest that the mask companies make a (greater?) effort to allow patients to try masks. I regularly attend an ostomy support group with a friend who has a colostomy. Last night there was a rep from one of the main supply companies there and he was giving away equipment of all sorts for anyone to try. Who benefits from that? Both the patient who finally finds the "right" piece of equipment and the company who manufactures it "win". The insurance companies do not lose and the medical personnel who give care are aided too. I understand that masks are expensive but I can't see why the companies can't have some kind of trial program perhaps run through the sleep labs rather than the DMEs. It is to the benefit of ALL for people to find what works for them. Sleep labs can disinfect masks (DMEs could too if they would!) or patients could pay a one-time fee to try a certain number of masks.

[the reach]

Encourage them to call the patient periodically - at least once a week at the beginning. My DME gave me a machine with a modem so she can look at the results overnight. I'd recommend that to others too, especially at the beginning. Many patients here are very active in their care and monitor their stats, but someone with full-on concentration issues or just nervous about the medical profession may not be good advocates for themselves and not call with their problems. Monitoring AND contacting me during my first couple of weeks resulted in me being far more confident in my DME, got me a new mask after she listened to me describe my nights (because even though the one I had was working from a therapeutic perspective it wasn't comfortable and I was still fighting with fit, thinking that it was me not adjusting, rather than it not being the right shape). She also had me in to the office and explained the graphs to me.

[BlackSpinner]

Modems? Not unless I get a complete copy of the data myself, though really? No way would I allow that kind of invasion of my home an privacy.

Masks- they are more important then shoes however i get to walk or run in a pair of shoes before I buy them and the person selling them knows how to fit my shoes! I never got the same service for the $300 mask I was provided with. I tell you if I go and buy a $300 pair of shoes I get fabulous service, someone kneeling at my feet, carefully adjusting the shoe, I get called "Ma'am" and treated with great respect and I feel great when I leave. I do not get shoved a mask from across the desk and told to "sign here" and call an 800 number to make an appointment if I want anything else. I do not get treated as if I was some sort of stupid nuisance they have to deal with and get out of their office ASAP.

[Tip10]

#1 First and foremost LEARN TO FIT MASKS! Slapping a mask on a sitting patient and turning the machine on for a few seconds is NOT properly fitting a mask.

#2 Develop some sort of trial system for new users -- Perhaps a system where new users are trialed on several different masks during the first 2-3 weeks of therapy -- masks should be tried for a minimum of 3 straight nights. ALWAYS review the waveforms for each mask -- don't leave it to a new patient to try and figure out the best fit. Only AFTER a patient has found a mask that they believe to be comfortable and to work for them should a mask be purchased for them. Yeah, this may mean a lot more upfront work for the DME's or Sleep Lab's RT's -- in the end though it'll mean a much happier patient who'll have a much much better working relationship with you and be more likely to continue using your services. Tossing a mask at a new patient and sending them off on their own is likely to drive them to look for other solutions...

#3 All machines should be data capable and the patients should be provided the methods of reviewing the data upfront -- if the patient chooses not to review the data that's the patients prerogative. At a minimum the patient should be taught how to view the Screen data and what it indicates. SleepNation has done a great job of putting together simple videos on the various machines -- WATCH THEM with your patients and THEN show them hands on how to step through the screens -- or develop other similar methods of teaching the patient. If the patient show's further interest in being able to view the data in more depth than shown on the screens -- provide the software and develop some resource references (i.e. this site) to provide them further info. Rest assured, if a patient is that interested in viewing the waveforms and such YOU won't be needing to be the one to teach them -- they'll be proactive enough to go find and learn what they need -- don't hinder them -- HELP them.

#4 Follow up with your patients -- at least a couple of times the first week and then weekly during the first month or two of therapy. Just listening to them and making suggestions may be all the encouragement they need to make the therapy work. Slapping a mask on them and sending out the door to fend for themselves will most likely end in failed therapy -- benefiting neither YOU nor the patient. NOTE: This is tailor made to what was said in item #2 -- if you work with your patients trialing masks you'll ALREADY have this kind of followup and it will definitely lead to better therapy and happier patients.

#5 Be upfront with the insurance billings -- explain everything -- and this is especially for the DME's -- you have a relationship with the insurance company (probably a fairly long term one) -- try and help them understand what their insurance will and won't cover -- get them contact numbers for their insurance company to review billings etc. Yeah, you are right, the patient should already know and be doing these things -- but they may not be. Be an ADVOCATE for the patient -- not an ADVERSARY.