Barriers to diagnosis

[JQLewis]

I've harped on this subject a number of times. I still can't quite wrap my head around it all. Are the statistics I've read really true, or at least reasonably true? If so, it's staggering. 20% of the US affected by OSA with 90% of the people affected undiagnosed? One recent study which was posted about here discussed the issue of patient/doctor relationships, and the tendency to prescribe meds for insomnia, when the real culprit is OSA, which of course is unaffected by these pharmaceutical treatments.

The study lay a good portion of the blame on the patients for "steering" doctors away from potential diagnoses of OSA, due to their unwillingness to address related issues like snoring. My initial reaction was skeptical, given that the ultimate responsibility for diagnosis has to rest with the doctor. Patients can't diagnose themselves. I find it hard to believe that too high a percentage of patients are scared off being diagnosed by fear of CPAP, because I just don't believe people are that aware of what CPAP involves. There seems to be a crying need for education for both doctors and the general population.

There is, of course, a remarkable tendency in human beings to deny unpleasant realities. Patients lie to themselves and to their doctors. If a patient goes to a doctor with a complaint about sleep problems however, that should be more than half the battle. Doctors can't be too reliant on what patients tell them, when the problems occur during sleep. Could it be that doctors are reluctant to suggest a possibility of OSA due to fear of being wrong? Testing is expensive, after all, and they may fear the consequences of recommending these studies without sufficient evidence to justify their recommendations. Maybe this is one conditions where it's better to talk to the spouses rather than the patients.

[AlabamaAl]

I think the biggest deterrent to sleep apnea treatment is denial.

Denial on the part of the person who falls asleep when he quietly sits,
denial that snoring could indicate a severe medical condition,
denial that the pauses in breathing noticed by a spouse is real, and not just something to pester you about.
denial that being tired all the time is not just because you are overworked.
denial that that a heart attack, diabetes, obesity, impotence, etc all loom for the future of the untreated person with OSA.
denial on the part of some older doctors that OSA is a serious issue and Cpap therapy is of benefit to the patient, not just "something else to keep track of". These same doctors never hesitate to prescribe harmful chemicals to treat the symptoms.

I faced these denials, and then was faced with fighting for a sleep test, from a doctor who did not think OSA needed treatment. I finally was able to get a cardiologist to recommend a sleep study. The sleep study was nothing! Certainly not as painful as when I had my chest split open for Triple bypass at the age of 37. Not even as painful as having to do a blood sugar stick three times a day! They just stuck electrodes all over my body, and told me to go to SLEEP. I was diagnosed with AHI of 127.. OSA not a real disease that requires treatment... BULL HOCKEY!!

I will now give up my Bi pap when they pry my cold dead fingers from around it!!

[raftergirl]

I am the odd person with OSA who didn't snore, so I didn't have friends & loved ones bugging me about that. Over the past year I started to notice myself getting more tired in the afternoon, on the drive home from work, and not being able to stay awake to watch anything on TV in the evening. Then the sleep disturbances started.....up 2-3 times every night to use the bathroom, waking up drenched in sweat. I just chalked it all up to menopause. Finally it started to affect my outdoor activities. I was way more tired than I usually was, and that bugged me. Finally, while on a vacation, a friend who shared a hotel room with me clued me in to the problem. She told me how bad and scary my breathing was at night. Her hubby has OSA, so she knew what was going on. All of a sudden it all made sense. I have a good friend who has been helped tremendously by cpap, and he also encouraged me to get checked. I did some reading, saw my primary care doctor, got a complete physical, then got a sleep study. Bingo.....I have OSA. I'm super lucky that cpap has been relatively easy for me to adjust to. I have a great PCP, and a great sleep clinic (awesome NP who uses cpap herself), and a pretty helpful and responsive DME. I've educated myself on treatment, and I'm willing to take an active role in my therapy. At first I was worried that I'd have to curtail my outdoor life because of the cpap, but now I know that with some planning (and some batteries) I can still do what I want.

Good luck with your co-worker!

[archangle]

I have a dual perspective: I am a physician who see's hundreds of sleep patients per year, and most have some degree of OSA. I also have sleep apnea myself and use CPAP. Many of my patients come to my office at the behest of their wives. Some come because they are mandated due to their employment. Many come because their doctor told them that they should. And a few come because they recognize that they have a problem. Many people with sleep apnea want to minimize the problem, because they are afraid that they will end up using CPAP, not realizing the benefit. Some people do not understand how advanced this treatment has become; and, I believe they think of this treatment as being minimally less barbaric than tracheostomy.

I would say that a sleep test is the easiest test that they will ever take, and that it does not obligate any treatment; and, knowledge is power- to make informed decisions, even bad ones. Without this information they are giving up control of their health to "hope". A roll of the dice. Too expensive? Find an IDTF instead of a hospital, or discuss the merits of split-night studies. Perhaps a home based apnea screen, although limited, would pave the way to the realization that there is a problem, which is a major barrier with some. Lastly, I have known people with severe apnea that I can't drag into completing any type of test despite my best efforts. You've got to sometimes know what you can change, yet accept what you can't. But, keep trying.

Dr. David Michalak
Sleep diagnostics of Texas

Welcome, David. I wish we had more doctors participate to see the real world experience of patients, and their opinions, both right and wrong about sleep apnea.

I think there's a lot to be learned here about why patients don't succeed or even try with CPAP.

I think one big problem is the number of patients who had horrid sleep studies. People hear the horror stories of other people's sleep studies. I can say so many things wrong with the way we do sleep studies now.

• Studies where the patient didn't sleep.
  I think every patient of a sleep study should have a sleeping pill prescribed to take if they can't sleep. You'd rather have results without a sleep aid, but it beats a sleep study with no sleep.
• Sleep studies that start at times like 7 PM. I can't get to sleep at home till 2 AM or so, and that's without all the wires, nervousness, etc.
• Many people have reported terrible sleep study rooms.
  Things like bad air conditioning with the thermostat in one room and some rooms are meat lockers and some are saunas. Noisy rooms where you hear the technician, garbage trucks beeping in the parking lot, hospital PA systems, etc.
• Forcing people to sleep on their backs because that's is the best position to see apneas. Of course, if the patient doesn't sleep well, you don't get good data.
• Poor mask fitting.

Patients also hear horror stories about people who've tried CPAP. Surly DME's, sketchy billing practices, doctors/DME's who don't followup and check on the effectiveness of the therapy and help with the patient's problems, doctors who don't even insure their patient gets a fully data capable machine.

[jnk...]

. . . CPAP, not realizing the benefit. Some people do not understand how advanced this treatment has become; . . .

+1

And I think that's why all of us who are successful with CPAP need to do our part in being vocal--to counter the negative info on CPAP put out by unsuccessful patients, by people over-hawking CPAP alternatives (though I don't mind reasonable hawking), and by primary docs who think the CPAP biz is a racket created by machine manufacturers.

I am thankful to the sleep doc who knew just how firm to be with me when he explained that I would be on CPAP the rest of my life and that I would learn to love it because it would give me my life back. He stripped me of my denial gently, but effectively.

[rogerthat]

Thank you all for your help

[JQLewis]

. . . CPAP, not realizing the benefit. Some people do not understand how advanced this treatment has become; . . .

+1

And I think that's why all of us who are successful with CPAP need to do our part in being vocal--to counter the negative info on CPAP put out by unsuccessful patients, by people over-hawking CPAP alternatives (though I don't mind reasonable hawking), and by primary docs who think the CPAP biz is a racket created by machine manufacturers.

I am thankful to the sleep doc who knew just how firm to be with me when he explained that I would be on CPAP the rest of my life and that I would learn to love it because it would give me my life back. He stripped me of my denial gently, but effectively.

This, to me, is key. Someone who is knowledgeable, passing on that info.

The overall question is, what prevents diagnosis? What percentage are people like the OP is asking about, who won't seek diagnosis, and what percentage are people who do seek diagnosis, but who get their conditions explained away as something other than SA? Effective treatment is another issue, but first you have to be properly diagnosed. Remember, we're talking about 20-30 million people who don't know what they have. One on one is fine, but I think that a more efficient method of education, of both doctors and patients, is necessary.

[chunkyfrog]

I wish more people could see how sexy cpap can be; how the extra energy can make you feel frisky,
look younger, and how effectively oxygenated sleep can help put "lead in a pencil".

[palerider]

how effectively oxygenated sleep can help put "lead in a pencil".

always important for anybody with an artistic bend... hard to draw without any lead in your pencil!

[Guest]

. . . CPAP, not realizing the benefit. Some people do not understand how advanced this treatment has become; . . .

+1

And I think that's why all of us who are successful with CPAP need to do our part in being vocal--to counter the negative info on CPAP put out by unsuccessful patients, by people over-hawking CPAP alternatives (though I don't mind reasonable hawking), and by primary docs who think the CPAP biz is a racket created by machine manufacturers.

I am thankful to the sleep doc who knew just how firm to be with me when he explained that I would be on CPAP the rest of my life and that I would learn to love it because it would give me my life back. He stripped me of my denial gently, but effectively.

I think each of us know of others (closely) who have or we suspect have Sleep Apnea but we cannot convince them to even be tested.

I don't have the answer for if I did I would shout it from a mountain top.

[mcpascalns]

I have a dual perspective: I am a physician who see's hundreds of sleep patients per year, and most have some degree of OSA. I also have sleep apnea myself and use CPAP. Many of my patients come to my office at the behest of their wives. Some come because they are mandated due to their employment. Many come because their doctor told them that they should. And a few come because they recognize that they have a problem. Many people with sleep apnea want to minimize the problem, because they are afraid that they will end up using CPAP, not realizing the benefit. Some people do not understand how advanced this treatment has become; and, I believe they think of this treatment as being minimally less barbaric than tracheostomy.

I would say that a sleep test is the easiest test that they will ever take, and that it does not obligate any treatment; and, knowledge is power- to make informed decisions, even bad ones. Without this information they are giving up control of their health to "hope". A roll of the dice. Too expensive? Find an IDTF instead of a hospital, or discuss the merits of split-night studies. Perhaps a home based apnea screen, although limited, would pave the way to the realization that there is a problem, which is a major barrier with some. Lastly, I have known people with severe apnea that I can't drag into completing any type of test despite my best efforts. You've got to sometimes know what you can change, yet accept what you can't. But, keep trying.

Dr. David Michalak
Sleep diagnostics of Texas

Dr. DM,

A great post from one who is both a suffer and a treater. Wow, I never saw this combination. That is amazing to know that you are here to share that unique perspective. Thank you.

[chunkyfrog]

Preaching to the choir!

[jonny515]

Being on the autism spectrum I certainly did NOT find that the sleep study was the easiest test to take!! I had a split study recommended but I didn't sleep long enough. But I did find the idea that it didn't obligate me to anything helpful. The titration was of minimal benefit because I didn't sleep long enough for that either.

I don't have a partner so I didn't know I snored. I have minimal symptoms, even though my sleep apnea is moderate. My PCP felt I might have sleep apnea and recommended a sleepy study.As is (often) the case, she was right. I have not been a very happy camper because I didn't feel I had any symptoms at all. This actually is not the case but they are a bit more subtle than average (at least what I read and hear).

I would say that a sleep test is the easiest test that they will ever take, and that it does not obligate any treatment; and, knowledge is power- to make informed decisions, even bad ones. Without this information they are giving up control of their health to "hope". A roll of the dice. Too expensive? Find an IDTF instead of a hospital, or discuss the merits of split-night studies. Perhaps a home based apnea screen, although limited, would pave the way to the realization that there is a problem, which is a major barrier with some. Lastly, I have known people with severe apnea that I can't drag into completing any type of test despite my best efforts. You've got to sometimes know what you can change, yet accept what you can't. But, keep trying.

Dr. David Michalak
Sleep diagnostics of Texas

[poppi2]

Noisy rooms where you hear the ..., garbage trucks beeping in the parking lot, ...

This happened to me during my titration study. My sleep room was along the drive to the dumpster. Not a happy customer then.

[bwexler]

When I started Medicare I got my first physical in 4 years.
The PCP had a horrible bed side manner but immediately diagnosed my Atrial fibrillation and OSA.
I don't think I had ever heard of SA, so I asked my friend Google about it. He led me to a couple of forums and here I am.
Once I was aware I got a split night study and was disappointed I couldn't score 100 on a test, only 84.
I went to a friend/MD who also happened to be a hose head. I got my APAP setup and the rest is history.

Now I can look back a decade or two and recognize my OSA symptoms, but ignorance kept me from doing anything about it.

I am now where the OP is trying to convince family and friends to get tested and do something about it.
With many it seems like talking to a wall.