On The Evolution of Sleep Medicine: Demystifying PAP Therapy

[kaiasgram]

This is the title of an article I've been 'writing' in my head all day, inspired (as it were) by the recent ASAA threads here and on their forum. An article about the need for a paradigm shift in the field of sleep medicine. A shift in the direction of taking the secrecy out of PAP therapy, educating and empowering patients to understand how positive airway pressure works, and transferring to patients -- to a reasonable degree -- both the right and the responsibility to more fully partner with their doctors in managing this serious and chronic condition. This absolutely includes teaching patients -- at least those who are motivated -- how to responsibly operate their PAP machines and if they are self-monitoring, how to make sure therapy is on track by understanding the data that the machines and/or software offer. Not all patients will choose this high a degree of investment and involvement in their therapy, but for those who wish to, the avenue should be wide open and supports in place in the medical system for them to do so.

In my former professional life at the university I wrote two grant proposals, both of which were funded by the State of California. Both involved behavioral health research studies. That was before chronic fatigue and later severe sleep apnea took their toll -- I'm not sure I can write that skillfully and persuasively anymore, to be perfectly honest. But after the last couple of days watching the ASAA forum and the ASAA thread here, I feel an itch.

I have no idea where such an article would be submitted for publication. I also know that for such an article to be taken seriously or given any consideration in the medical community, it would have to include the voice of at least one well respected sleep medicine physician. While some of us are now encountering doctors who are thinking more openly about us educating ourselves, learning how to adjust our pressure(s), and knowing how to evaluate and respond to the results of those adjustments, I am not certain if there are any physicians at this time who would be willing to lend their voice in a more public and formal way to the idea.

I think that the ASAA forum should not be the focus of our frustration anymore. It is very sad that they operate the way they do, but I think the only chance for progress and change will come from the top down, not at the level of the forum and its moderators. Those of us who participated in the recent ASAA thread were told that we should direct our comments about the forum's Terms of Use to the ASAA moderators. Methinks those comments would quickly find their way into a black hole. But earlier today I started thinking about the Board of Directors -- as I'm sitting here spilling thoughts at 1:30 a.m. , I'm wondering about a letter/article directed to members of the ASAA Board as a start, but only a start. Because there really would need to be a major paradigm shift on a broad scale in the sleep medicine field before it would ever translate or trickle down to changes in the Terms of Use on the ASAA forum.

I don't know, I'm just brainstorming and maybe that's all. But I thought I'd share what I'm thinking about and see if anything comes of it. It's certainly not something I could do alone.

Thanks for e-listening. Coming up on 2 a.m. and I've now thoroughly tuckered myself out -- G'nite all!

[Julie]

Hi - what you need to do is persuade a few sleep disorder-oriented neurologists, pulmonologists and cardiologists to systematically pressure (through med journal submissions, or med school courses) the whole establishment to look at it with new eyes (and brains!), the way they did for e.g. diabetics 75 years ago when they began educating patients on how to test their blood at home and interpret from it what and when to eat that day, along with how much insulin to take.

The field though is so new, relatively,) that doctors - who have to be the ones to take the lead and push the ideas - and doctors so pressed for time, that it may take even another generation before some consistency is in place, with regard to agreement on basics and then putting things into place. Also, emphasis has to either come off accepting shoddy and all-over-the-place involvement by poorly trained and greedy DME's, and by insurance companies who run things according to their bottom line rather than what's good medicine. Maybe a dedicated foundation or standards-based overseeing group (like the CDC in Atlanta?) needs to be set up as a clearing house to coordinate it properly, with specifics on patient teaching - and how much or little to involve us, along with standards for doctors and technicians. Maybe some kind of fundraising org. could be set up for the purpose.

Good luck, good writing, be patient.

[49er]

Great post Kaisgram and you make a good point about the ASAA forum not being a source of our frustration.

Have you considered writing a letter to the head of the ASAA board stating what you wrote here? Sorry, I don't mean to come across as passing the buck but I fear since I was banned that I might not be taken as seriously if I did.

Meanwhile, anyone who is looking for a sleep medicine doctor might want to consider asking any potential physician if they would be willing to do what you are suggesting. Anyone who hems and haws might not be a good choice.

49er

This is the title of an article I've been 'writing' in my head all day, inspired (as it were) by the recent ASAA threads here and on their forum. An article about the need for a paradigm shift in the field of sleep medicine. A shift in the direction of taking the secrecy out of PAP therapy, educating and empowering patients to understand how positive airway pressure works, and transferring to patients -- to a reasonable degree -- both the right and the responsibility to more fully partner with their doctors in managing this serious and chronic condition. This absolutely includes teaching patients -- at least those who are motivated -- how to responsibly operate their PAP machines and if they are self-monitoring, how to make sure therapy is on track by understanding the data that the machines and/or software offer. Not all patients will choose this high a degree of investment and involvement in their therapy, but for those who wish to, the avenue should be wide open and supports in place in the medical system for them to do so.

In my former professional life at the university I wrote two grant proposals, both of which were funded by the State of California. Both involved behavioral health research studies. That was before chronic fatigue and later severe sleep apnea took their toll -- I'm not sure I can write that skillfully and persuasively anymore, to be perfectly honest. But after the last couple of days watching the ASAA forum and the ASAA thread here, I feel an itch.

I have no idea where such an article would be submitted for publication. I also know that for such an article to be taken seriously or given any consideration in the medical community, it would have to include the voice of at least one well respected sleep medicine physician. While some of us are now encountering doctors who are thinking more openly about us educating ourselves, learning how to adjust our pressure(s), and knowing how to evaluate and respond to the results of those adjustments, I am not certain if there are any physicians at this time who would be willing to lend their voice in a more public and formal way to the idea.

I think that the ASAA forum should not be the focus of our frustration anymore. It is very sad that they operate the way they do, but I think the only chance for progress and change will come from the top down, not at the level of the forum and its moderators. Those of us who participated in the recent ASAA thread were told that we should direct our comments about the forum's Terms of Use to the ASAA moderators. Methinks those comments would quickly find their way into a black hole. But earlier today I started thinking about the Board of Directors -- as I'm sitting here spilling thoughts at 1:30 a.m. , I'm wondering about a letter/article directed to members of the ASAA Board as a start, but only a start. Because there really would need to be a major paradigm shift on a broad scale in the sleep medicine field before it would ever translate or trickle down to changes in the Terms of Use on the ASAA forum.

I don't know, I'm just brainstorming and maybe that's all. But I thought I'd share what I'm thinking about and see if anything comes of it. It's certainly not something I could do alone.

Thanks for e-listening. Coming up on 2 a.m. and I've now thoroughly tuckered myself out -- G'nite all!

[mollete]

"IMHO", there's a few huge obstacles:

• In re: the software, the patient would need to be able to acquire it legally. They aren't going to condone software piracy or homegrown betaware that every now and then says your AHI is 30,000.
• It is far more likely that the manufacturer's plan for patient involvement will be put into widespread operation first (see Sleepmapper).
• Many patients are not interested or motivated to explore OSA to that depth, many physicians do not have the time to devote to individuals, and the proposed ideal will not occur as long as one of those is present in the pair.
• Many patients do not want (or need) to spend the amount of time to their disease as a lot of the forum members do. Between time on the forum, researching stuff, microscopically examining waveforms, getting obsessed with "The Number" ("OMIGOD MY AHI IS 1.9!! I'M GONNA DIE!!!")-- that's a major time investment.
• The current system is moving faster away from effective care and follow-up than any proposal attempting to get it back. It's get an HST, look at breathing parameters only, wide onen APAP for 12 weeks, look at compliance and if you're not using it enough they snatch it back and that's the end of it.

[ReadyforRest]

This is the title of an article I've been 'writing' in my head all day, inspired (as it were) by the recent ASAA threads here and on their forum. An article about the need for a paradigm shift in the field of sleep medicine. A shift in the direction of taking the secrecy out of PAP therapy, educating and empowering patients to understand how positive airway pressure works, and transferring to patients -- to a reasonable degree -- both the right and the responsibility to more fully partner with their doctors in managing this serious and chronic condition. This absolutely includes teaching patients -- at least those who are motivated -- how to responsibly operate their PAP machines and if they are self-monitoring, how to make sure therapy is on track by understanding the data that the machines and/or software offer. Not all patients will choose this high a degree of investment and involvement in their therapy, but for those who wish to, the avenue should be wide open and supports in place in the medical system for them to do so.

kaiasgram, I completely agree. We use this forum as a support group. Because we are self-starters, and motivated, we made sure we found a location where we could search for help. Some people aren't motivated and don't care and just want to do what the doctor said without asking questions or finding out more. That's maybe fine for them (although they might in the end be part of the 50% who drop out). Others don't know a place exists for help, and when some of those people do find this place ... sometimes years after starting therapy ... it's a revelation to them. They're overjoyed at the new flood of information, and happy to finally have a place to get information that is not handed out so freely from the doctors or DME's. It just is a smart thing to do, to advocate for patient support.

Maybe it IS time to become more organized. To form a patient advocacy group for cpap. But I think that going to only one organization and offering them ideas and suggestions would not gain us much. Approaching medical boards, and individual sleep doctors, offering them our perspective as cpap users/patients, and giving them constructive feedback as to how they can add information to their consultations with patients ... that would be a good start.

Just as an example, I had shoulder surgery several years ago. The orthopedic specialist told me very little about what to expect afterwards, nor how to prepare for it. He just told me a few basic things about what to expect from the surgery. His receptionist handed me a form sheet that told me to wear loose stretchy clothing to wear home after the outpatient surgery. and that I would need physiotherapy afterward. So I bought loose xl sized sweats & pj's. I woke from surgery with a huge massive bandage on my shoulder. However the supposedly loose clothing I wore in there was not adequately large enough to comfortably accommodate the gargantuan bandage. The recovery nurse looked at me with a frown on her face. I thought to myself, in my groggy state ... someone should have given me more instructions. Somehow there was a disconnect between what the doctor was telling me about the whole experience and what, as a patient, I actually went through. And at no time during this whole recovery process (which took 8 months) was I directed to a support group or any further information that would have helped me, either before or after, in gaining knowledge to get me through it more comfortably. The physiotherapist was my only connection to information. That seems to be the way doctors operate ... lol ... I mean, function, often. They do their job in the 15 minutes they have to meet with you, and then on to the next. I think that's not good enough.

Sleep doctors need to understand that if they want their patients to be successful, and not fall into the 50% drop-out category, then they should step up and give us the tools and connections to help us to BE successful. That means we need more knowledge and more help. If doctors don't have time in their busy schedules to give us that knowledge and help then they should be referring us to places that CAN give us that help, as new patients who know nothing whatsoever about cpap.

I am SO happy and lucky to have found this forum right at the beginning of my treatment. It has helped me immensely with understanding how to make cpap work for me. And it has helped me to feel invested in my own treatment. It's why I'm successful and will keep using my machine. I just want that for others who go to visit the sleep doc and are overwhelmed with the experience, and are uncertain how to proceed, and don't know about places like this that can help them stay with their therapy. Or simply don't know what kind of treatment they are getting, don't know the options about different masks that they can be using, don't know about different head pillows, sleeping positions, REM events, autopap vs cpap vs bipap and on and on.

[BlackSpinner]

"IMHO", there's a few huge obstacles:

• In re: the software, the patient would need to be able to acquire it legally. They aren't going to condone software piracy or homegrown betaware that every now and then says your AHI is 30,000.
• It is far more likely that the manufacturer's plan for patient involvement will be put into widespread operation first (see Sleepmapper).
• Many patients are not interested or motivated to explore OSA to that depth, many physicians do not have the time to devote to individuals, and the proposed ideal will not occur as long as one of those is present in the pair.
• Many patients do not want (or need) to spend the amount of time to their disease as a lot of the forum members do. Between time on the forum, researching stuff, microscopically examining waveforms, getting obsessed with "The Number" ("OMIGOD MY AHI IS 1.9!! I'M GONNA DIE!!!")-- that's a major time investment.
• The current system is moving faster away from effective care and follow-up than any proposal attempting to get it back. It's get an HST, look at breathing parameters only, wide onen APAP for 12 weeks, look at compliance and if you're not using it enough they snatch it back and that's the end of it.

Compare it to diabetes. People are encouraged to control their glucose levels. There are books, pamphlets, magazines, workshops, videos, trainers, websites, associations and groups everywhere you look. We need the same thing for xpap therapy. One of these days the insurance industry is going to wake up that the less the 50% compliance is costing them a lot of money in future expenses, especially when they can no longer use the "pre existing condition" clause to reject treatment.

They aren't going to condone software piracy or homegrown betaware that every now and then says your AHI is 30,000.

LOL I have been involved in software for 40 years - everything is beta ware. Some of the best software out there was written as open source homegrown code.

[chunkyfrog]

I am one of the few here who rarely go beyond the display for my data. Not enough time before, and this still works for me.
I do, however, have my sleep report set to "ON", and I put my hours, 95% pressure, leak, AHI, and CA into a notebook,
along with my Lantus dosage and my morning glucose reading, (my doc's special interest is diabetes)
I saw my PCP this morning, and he really likes my notebook, even the cpap info.
I am thinking of contacting him with a proposal to be a volunteer coach for new cpap patients,
--and even to help provide source info for any whose insurance will not cover DME. (online???)
Baby steps, and I believe I can make a small difference, having at least somewhat won over one doctor.
(and I'm still working on the respiratory doc.)

[robysue]

Maybe it IS time to become more organized. To form a patient advocacy group for cpap. But I think that going to only one organization and offering them ideas and suggestions would not gain us much. Approaching medical boards, and individual sleep doctors, offering them our perspective as cpap users/patients, and giving them constructive feedback as to how they can add information to their consultations with patients ... that would be a good start.

I agree completely.

And the sad thing is, part of the ASAA's mission statement says:

(from http://www.sleepapnea.org/about-asaa/who-we-are.html :
The American Sleep Apnea Association, founded in 1990, is a 501(c)(3) nonprofit organization that promotes awareness of sleep apnea, works for continuing improvements in treatments for this serious disease, and advocates for the interests of sleep apnea patients. Our mission is simple:

The American Sleep Apnea Association is dedicated to reducing injury, disability, and death from sleep apnea and to enhancing the well-being of those affected by this common disorder. The ASAA promotes education and awareness, the ASAA A.W.A.K.E. Network of voluntary mutual support groups, research, and continuous improvement of care.(emphasis in the original)

And hence you would think that patient advocacy would be part of ASAA's core mission of "education", "research" and "improvement of care" for sleep apnea patients. And that is where I've been frustrated over there.

But to get back ON topic:
I do think that some kind of an identifiable patient advocacy group needs to be formed. Right now we (meaning the members of cpaptalk.com) do a lot of patient advocacy, but we're doing it piecemeal. We talk to our particular doctor if s/he is approachable, and ignore him/her if s/he's not. We try to communicate needed information about the importance of data capable machines to the newbies lucky enough to find us. But we have no real way of communicating to the sleep medicine industry at large in a way that might make them sit up and take notice. And hence we have no way of trying to change the system from the top down.

Take data capable machines for example: We're often told by the proverbial "they" (the manufacturers, the DMEs, the sleep docs, [and those pesky moderators over at ASAA]) that most patients don't care about their data (probably true) and hence it's fine if most patients are sold S9 Escapes, PR System One Pluses, and PR System One SE's. But it is NOT fine for any patient to be stuck with such a machine.

And here's why: Even if the patient never, ever looks at the data and never, ever wants to learn a damn thing about their condition, the data is the ONLY way the doctor who is supposed to be treating the patient can be sure that things are "ok" on an on-going basis. The analogies that comes to mind are these: If you've been diagnosed with high blood pressure, how would you feel if your doc NEVER checked your blood pressure to see if the prescribed medication was bringing it down to an acceptable level? If you've been diagnosed with diabetes, how would you feel if your doc NEVER checked your blood sugar levels to see if the prescribed diet and medication were keeping the blood sugar levels down where they belong?

It seems like such a no-brainer: A sleep doc ought to at least casually glance at the summary data at each follow up appointment and quickly assess whether the AHI is below 5 and whether the leaks are acceptable since that's the way you establish whether the on-going therapy is doing what it's supposed to be doing or not. And this is particularly important when it comes to a new PAPer who is experiencing serious problems trying to sleep with the machine and who is also uninterested in the data. The PAPer gets more and more frustrated because trying to sleep with the machine appears to be making a bad situation worse and all the "support" they get from the doc's office is one or more of these statements:

• You aren't using the machine enough. Give it time.
• You must be leaking. Try a chin strap or full face mask
• Let's bump the pressure up a cm or two and see if that helps.

But since the PA, nurse, or doc giving the advice has NO data (beyond compliance data) s/he is just guessing as to what the problem might actually be. And if the problem is NOT leaks and the problem is NOT something that can be resolved by throwing additional pressure at it, the problem remains UNSOVLED and in a matter of a few more weeks, the frustrated PAPer gives up and throws the machine in the closest (or returns it to the DME) and then proceeds to badmouth CPAP therapy to anyone and everyone who will listen. No wonder CPAP has such a bad reputation.

EDITED to delete a quote from ReadyforRest that wasn't part of my post in the first place. (Sorry about that ReadyforRest.)

[kaiasgram]

And the sad thing is, part of the ASAA's mission statement says:

(from http://www.sleepapnea.org/about-asaa/who-we-are.html :
The American Sleep Apnea Association, founded in 1990, is a 501(c)(3) nonprofit organization that promotes awareness of sleep apnea, works for continuing improvements in treatments for this serious disease, and advocates for the interests of sleep apnea patients.

... that would include US, we are sleep apnea patients, yet our voices and our interests are regularly silenced on the ASAA forum. There is more regulation and restriction than advocacy.

My thoughts have turned more away from ASAA and more toward the medical profession -- not with the idea of suggesting that physicians take on more in their roles, but rather asking them to conceptualize the treatment of sleep apnea in a different way. I agree with the poster who said that a number of health professionals in the field who are already part of the system -- nurses, respiratory therapists, sleep technicians -- could be involved in training patients who wish to understand and monitor their sleep therapy. BlackSpinner's pointing to how far patient involvement and responsibility for self-care has come in diabetes management is a good 'prototype' for the sleep medicine professional community to embrace.

I was looking at the AASM (not the ASAA) website earlier. I may peruse their professional journal to see if they run editorial pieces. That might be one possible venue for trying to plant seeds of thought in the field (sleep medicine).

Thanks for sharing your ideas, guys.

[hyperlexis]

"IMHO", there's a few huge obstacles:

• In re: the software, the patient would need to be able to acquire it legally. They aren't going to condone software piracy or homegrown betaware that every now and then says your AHI is 30,000.
• It is far more likely that the manufacturer's plan for patient involvement will be put into widespread operation first (see Sleepmapper).
• Many patients are not interested or motivated to explore OSA to that depth, many physicians do not have the time to devote to individuals, and the proposed ideal will not occur as long as one of those is present in the pair.
• Many patients do not want (or need) to spend the amount of time to their disease as a lot of the forum members do. Between time on the forum, researching stuff, microscopically examining waveforms, getting obsessed with "The Number" ("OMIGOD MY AHI IS 1.9!! I'M GONNA DIE!!!")-- that's a major time investment.
• The current system is moving faster away from effective care and follow-up than any proposal attempting to get it back. It's get an HST, look at breathing parameters only, wide onen APAP for 12 weeks, look at compliance and if you're not using it enough they snatch it back and that's the end of it.

I agree and disagree with this to an extent, especially regarding effective follow up care. Including with the premise of the OP's argument. CPAP therapy is really what the patient makes of it. If the patient wants nothing, and asks for nothing, he gets nothing. However if one actively participates in care, then the resources are there. My DME's RT still takes my SIM card for review when I send it in, now almost a year after starting therapy. No one has told me to stop, and I am well paying for the service by buying supplies from them every so often. So I do still get a professional's opinion on whether things are fine or whether a pressure change may be needed. Plus, I have an auto machine (more and more people now get auto machines) so it will likewise adjust to changing needs anyway (opti-start). If I have a mask I am tired of struggling with or a new one comes out, I can get advice on that too.

I think a lot of these issues arise from the fact that so many people, including cpap users, just have no insurance, or poor insurance, and thus few places to turn for help. They snore badly, they know they have something seriously wrong, so they get an old machine off Craigslist and they have to deal with it on their own. No follow up care at all, or minimal. On January 1, however, there will be a complete paradigm shift and that will start to change. People long denied access to CPAP resources and care will finally be able to obtain them. So ideally, then, cpap care will improve, poor performing DMEs will start to be weeded out, and overall cpap compliance will increase.

I would imagine the biggest problem with cpap/pap compliance is simply getting users to put the masks on their faces, not so much tracking and adjusting numbers on a daily basis or concern over 'self'care'. The vast majority of users probably are looking for an easy to use, comfortable machine and mask, and expect their MDs and their fancy new machines are just doing their jobs properly. As one rightly should. Regarding the analogy to diabetes, it is sadly, a good analogy -- it's difficult enough getting people to test their blood sugars properly and then report their numbers to their doctors. Just getting over that first hurdle is the biggest step of all.

[chunkyfrog]

I would like to think the greedy, morally irresponsible DME's will be the ones weeded out;
but I fear they will remain, while the good ones will become harder and harder to find.

[robysue]

I would like to think the greedy, morally irresponsible DME's will be the ones weeded out;
but I fear they will remain, while the good ones will become harder and harder to find.

While the " greedy, morally irresponsible DME's" create a huge problem, they are only part of the problem. If the manufacturers stopped making compliance data only bricks, even the worst DME would not be able to foist off a brick on the new PAPers who have no idea what's going on.

[kaiasgram]

I would like to think the greedy, morally irresponsible DME's will be the ones weeded out;
but I fear they will remain, while the good ones will become harder and harder to find.

While the " greedy, morally irresponsible DME's" create a huge problem, they are only part of the problem. If the manufacturers stopped making compliance data only bricks, even the worst DME would not be able to foist off a brick on the new PAPers who have no idea what's going on.

Agree, and if doctors started refusing to prescribe bricks, the manufacturers would stop manufacturing them.

[hyperlexis]

I would like to think the greedy, morally irresponsible DME's will be the ones weeded out;
but I fear they will remain, while the good ones will become harder and harder to find.

While the " greedy, morally irresponsible DME's" create a huge problem, they are only part of the problem. If the manufacturers stopped making compliance data only bricks, even the worst DME would not be able to foist off a brick on the new PAPers who have no idea what's going on.

Agree, and if doctors started refusing to prescribe bricks, the manufacturers would stop manufacturing them.

All things being equal it's better to have a 'brick' machine than no machine. It's old fashioned and one has to have more follow up laboratory sleep tests to make sure the pressures are still proper as time goes on, but having a blower is still far better than completely untreated apnea. It's not something I would prefer, but given the choice, I'd take it over nothing. It's old school, but it does work. I know my MD, who is not a stupid lady, just Rx an "apap" machine. Being that I knew some things and learned a lot from this blog before getting the machine, I had to have her go back and re-write the Rx to include the specific make and model. It even forced the original DME to totally reject my order (they only used DeVilbiss) and I had to go find another local DME that sold models with heated tubes (PR/ResMed).... Eventually, however, I imagine 'brick' machines will simply go the way of the buggy whip. More and more physicians will start demanding more advanced machines with data capabilities.

[msla]

I wonder is this meeting and exhibition has a place for patients?
http://www.sleepmeeting.org/
http://www.sleepmeeting.org/presenters/ ... submission

I agree that we need to be partners in our therapy.