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Sleep Apnea Survey! - Hydrangea - 05-16-2018
I found this survey for sleep apnea patients to share their sleep apnea experience and sleep apnea treatment experience with a group that will then take this data to the FDA, to inform them about sleep apnea patients' experiences.
https://www.awakesleepapnea.org/
Here's an article that talks about the survey, but moreso about the summit that will happen with the FDA regarding sleep apnea (where the data from this survey will be shared on June 8th).
It's a very thorough survey, with a lot of boxes to add your own comments (which I did, quite verbosely!). I made sure to emphasize what was working for me (APAP), what did not work for me (doctors dismissing my fatigue for the last 30 years), and what gets in my way (corruption in the sleep apnea "business" of sleep doctors being their own DMEs, etc.).
Lots of opportunity to speak your mind in this survey... or to just check the boxes. But I hope "they" will listen to what they learn from this. And what better group of people to complete this survey than we at Apnea Board?
RE: Sleep Apnea Survey! - ardenum - 05-16-2018
Apropos,
Those sleep surveys everyone takes at their sleep doctor? They are used to weed out 'trouble' people. In case you have low AHI and good O2% sat. and you fill in you have terrible sleep, then you are then placed on the 'psychosomatic' list and then you end up either at a psychiatrist with pills or the lucky ones end up on this board.
RE: Sleep Apnea Survey! - Hydrangea - 05-16-2018
This is different than that.
This is a survey of many people, and the data will be presented to the FDA to discuss sleep apnea and patients' experiences.
The survey we fill out for the sleep doctor is just exactly what you said. And yeah, I was a lucky one who 1) ended up here, and 2) insisted to my sleep "doctor" that I needed to at least TRY a titrated sleep study because doing nothing wasn't working for me.
RE: Sleep Apnea Survey! - SideSleeper - 05-16-2018
Did the survey!
RE: Sleep Apnea Survey! - PaulaO2 - 05-16-2018
It is a confusing survey. There's few places where they ask "this is about your UNtreated sleep apnea" or "this is from BEFORE you began treatment."
I couldn't figure out how to answer.
RE: Sleep Apnea Survey! - Hydrangea - 05-16-2018
(05-16-2018, 06:30 PM)PaulaO2 Wrote: It is a confusing survey. There's few places where they ask "this is about your UNtreated sleep apnea" or "this is from BEFORE you began treatment."
I couldn't figure out how to answer.
I felt the same way. I figured out that for the most part, when asking about symptoms/experiences, it means pre-treatment.
RE: Sleep Apnea Survey! - DeepBreathing - 05-16-2018
Agree that the survey is confusing.
I also noted that two of the sponsors are Fisher & Paykel and Resmed. I'm not sure that they are champions of patient empowerment!
RE: Sleep Apnea Survey! - SarcasticDave94 - 05-16-2018
Thanks for sharing this. I just took the full survey. The event mentioned is close to home-ish. I'm considering attending.
PS I've decided to register for attendance via the web.
RE: Sleep Apnea Survey! - Vitamin J - 05-17-2018
I did it as well, and was also confused on a few of them
RE: Sleep Apnea Survey! - PaulaO2 - 05-17-2018
I'll try it again and answer everything as if without machine.