I think it is worth mentioning that I did not say CPAP was a scam[1].
robysue wrote:Todzo wrote:
It's current implementation:
1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
5. Failure to educate the customer as to how to use and get used to CPAP.
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[1,2].
Blaming the SYSTEM does not make the therapy a scam. It means that the SYSTEM needs to be changed.
Saying "CPAP is a scam" indicates that CPAP is an unscientific and ineffective treatment for OSA for
all patients. The calling a proposed therapy a "scam" is the equivalent of calling it "snake oil".
but I never did say that CPAP was a scam so why imply that I did???
robysue wrote:And any way you look at it, the scientific data demonstrate that CPAP is effective at treating OSA in large numbers of patients with OSA; it's far more effective than many other commonly accepted medical therapies for other conditions. So CPAP is definitely NOT a scam.
As I have looked into various medical interventions I am amazed how many fall into the same range of effectiveness as placebo.
robysue wrote:The problem you describe is with the SYSTEMATIC way docs and DMEs interact with OSA patients, and I strongly agree that the SYSTEM is indeed badly broken.
Well there is some bad science mentioned as well. But yes we do agree that the way CPAP is currently implemented is very broken.
robysue wrote: And one part of that badly broken SYSTEM is how docs and DMEs interact with patients who do turn out to be genuine non-responders to CPAP therapy.
So which of the nonanatomic causes of sleep apnea[2,3] do you blame for them becoming non responders?
robysue wrote: There are also a lot of problems in the SYSTEM with how docs and DMEs interact with people who respond to PAP, but not in the anticipated way and there are problems in the SYSTEM with how doc and DMEs interact with newbies who are struggling to become compliant in the first place.
Oh that the newbies would be properly educated!!
robysue wrote:But CPAP is NOT the only commonly prescribed therapy for a chronic medical condition with a very high rates of "non-compliance" and "non-adherence" and "non-persistence" from the patients. Two other common chronic medical conditions with high rates of non-compliance/adherence/persistance are glaucoma and high blood presssure:
- From Adherence and Persistence with Glaucoma Therapy published in the medical journal SURVEY OF OPHTHALMOLOGY come two remarkable statements concerning patient adherence/compliance with long term drug therapy for managing glaucoma and high blood pressure:
- "Recent research brings the unwelcome conclusion that persistence with initial glaucoma medication is as low as 33--39% at 1 year" (page S58 and footnoted with several sources for this statistic)
- In U.S. studies of prostaglandin analogs, the adherence rate for glaucoma eyedrops is similar to that for hyperten- sion pills, a disturbing 70% over time.
- From Medscape comes this statement with respect to a large study of glaucoma patients adherence to therapy:
- "The overall mean and median rate of medication compliance were 52% and 57%, respectively. But this overall picture did not accurately reflect the real situation, the researchers believe. They found that the data were bimodal in terms of the MPR: 27% of the patients were poorly compliant, 31% were fairly complaint, and 31% were highly compliant"
- Long term high blood pressure management is also problematic. From Medication Adherence and Persistence in Hypertension Management we get this statement"
- "Rates of nonadherence to antihypertensive medications range from 9% to 37%, while nonpersistence has been found to occur at even higher rates (30% to 50%) in patients 12 months after the initiation of antihypertensive therapy."
- In After the Diagnosis: Adherence and Persistence With Hypertension Therapy
- "It is believed that poor adherence to therapy contributes to lack of good BP control in more than two thirds of people living with hypertension.6 As many as half of all patients who use antihypertensive drugs have been found to discontinue treatment within follow-up periods ranging from 6 months to 4 years.[7-10]"
So are we to conclude that glaucoma and high blood pressure therapies are
scams because large numbers of people who are prescribed these therapies do not manage to become compliant with the prescribed therapy? Should we assume the problem is these therapies are
ineffective in large numbers of people because way too many people quit taking the prescribed drugs for a multitude of reasons? Or are the therapies are effective for most people if they can adhere to the therapy in the long run, but the problem is becoming compliant/adherent to therapy in the first place?
Of course, one big difference is that that the docs who are working on improving patient adherence/compliance/persistence with glaucoma and high blood pressure therapies openly acknowledge the
problems their patients face with becoming and staying compliant, and they might not so quick to use "blame the patient" language as the sleep docs who treat us seem to be.
Of course, another difference between (glaucoma and high blood pressure) and OSA is that there are other medications out there if a particular patient has a very bad response to a particular medication. And unfortunately, right now, there don't seem to be any alternative treatments for OSA that have been demonstrated to be highly effective for
large numbers of people with severe OSA except, of course, for doing a trach on the person.
again I never said that CPAP is a scam[1]
robysue wrote:But research into alternatives is taking place. For example, well fitted oral appliances have been proven to be highly effective in many, but not most for people in the mild and mild-to-moderate range. The tongue-zapper that's being developed may indeed eventually revolutionize how OSA is treated, but right now, it's effective only if the person has one well defined problem area that causes the collapse of the airway and has significant potential risks associated with it as well as a significant price tag.
I look forward to a time where our diagnoses of Sleep Apnea is complete enough to understand which of or how many of our tools can be used to truly resolve the issues that are present.
robysue wrote:It would be nice if more research were being done into making xPAPs more comfortable and more tolerable.
It is. But the politics are hampering the processes.
robysue wrote: And it would be really nice if part of that research did include figuring out why some people do respond so badly to CPAP in spite of being fully compliant with good efficacy data numbers.
yup
robysue wrote: It would also be nice to see further research into why some people do go on to develop real problems with centrals once they start CPAP.
yup
robysue wrote: It would also be nice to see additional research into determining which patients would benefit from using a bi-level or ASV even if all they've "technically" have is plain old OSA.
yup
robysue wrote: And of course, it would be very useful if the differences between UARS and OSA were better understood and if some studies could definitively answer the question of "What's the best thing to do for a person with UARS?"
yup (but with the politics they are still at “does UARS exist?”)
robysue wrote:But much more immediate, it would highly useful if the sleep medicine community would get serious about implementing quality patient education programs and patient support programs, because there have been a number of studies done that show these two things WOULD go a long way towards increasing the overall compliance rates for CPAP.
Which means they would have to care and too many of them very clearly do not!!
If you care about people you do not scam them. If you care about people with sleep apnea then you update the processes. If you care about people with sleep apnea you find out why they have trouble using the device you just sold them on rather than prevent the research which would show how much trouble they are having and why.
And for crying out loud you do not blame them for having trouble using the equipment you just sold them (or proscribed for them)!!!
[1] Original Post:
CPAP is a product that can work for some people.
It's current implementation:
1. Failure to do unbiased research into how usable CPAP is (and is not) and to present the results of that research to the customer so that the customer can make an informed decision.
2. Sleep studies done in the lab (at great expense) rather than the home. Bad science since we do not sleep in the lab. Bad science since we sleep different every night (you need several nights to really know but the extreme expense...). Bad science since the expense of the test hampers sleep.
3. Titration done in the lab. Same basic issues as with sleep studies. To be effective titration needs to be ongoing. I believe it is best to make small changes at home and use the home gathered data to determine if further changes are needed. But then you would need to see that the data was monitored...
4. Failure to educate the customer regarding the limitations of CPAP regarding usability and expected results.
5. Failure to educate the customer as to how to use and get used to CPAP.
6. Failure to monitor how the customer is doing with CPAP as time goes by. The body will change the therapy must also change to be effective but it does not happen.
7. Blaming the customer when CPAP fails in spite of the fact that it does not treat many of the causes of sleep apnea and actually exacerbates some of the nonanatomic causes[2,3].
Is worthy of being called a scam.
[2] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC
[3] Sairam Parthasarathy M.D., Emergence of Obstructive Sleep Apnea Phenotyping. From Weak to Strong! American Journal of Respitory and Critical Care Medicine VOL 188 2013
-- critical closing pressure [Pcrit] - Arousal Threshold - ventilatory control Loop gain - and genioglossal Muscle responsiveness. Pcrit, Loop, Arousal, Muscle (PALM)--