Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Sleep Apnea Survey!
#1
Exclaimation 
Sleep Apnea Survey!
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?   like
Post Reply Post Reply



Donate to Apnea Board  
#2
RE: Sleep Apnea Survey!
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.
Post Reply Post Reply
#3
RE: Sleep Apnea Survey!
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.
Post Reply Post Reply
#4
RE: Sleep Apnea Survey!
Did the survey!
Post Reply Post Reply



Donate to Apnea Board  
#5
RE: Sleep Apnea Survey!
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.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




Post Reply Post Reply
#6
RE: Sleep Apnea Survey!
(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.
Post Reply Post Reply
#7
RE: Sleep Apnea Survey!
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!
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply



Donate to Apnea Board  
#8
RE: Sleep Apnea Survey!
Thanks for sharing this. I just took the full survey. The event mentioned is close to home-ish. I'm considering attending.

Coffee

PS I've decided to register for attendance via the web.
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

Wiki Info for Beginners
Sleepyhead Chart Organization
Post Reply Post Reply
#9
RE: Sleep Apnea Survey!
I did it as well, and was also confused on a few of them
A man who may be asked in this century, what he did to make his life worthwhile, can respond with a good deal of pride and satisfaction, "I served in the United States Navy" ~ Pres. John F. Kennedy
Post Reply Post Reply
#10
RE: Sleep Apnea Survey!
I'll try it again and answer everything as if without machine.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




Post Reply Post Reply



Donate to Apnea Board  


Possibly Related Threads...
Thread Author Replies Views Last Post
  Newly diagnosed severe sleep apnea DarciWantsToSleep 10 308 12-13-2018, 08:57 PM
Last Post: SideSleeper
  Are Sleep Apnea oral appliances & sleep apnea mouth pieces underrated? BC3B 25 517 12-07-2018, 03:32 PM
Last Post: mesenteria
  New to Board and Sleep Apnea [masks, general info request] Stella66 7 248 12-03-2018, 06:37 PM
Last Post: OpalRose
  2 1/2 hour MRI and sleep apnea car54 22 442 12-02-2018, 10:40 AM
Last Post: SarcasticDave94
  Surgery (non orthognathic) for Sleep Apnea. Preferred ENT or Maxilofacial surgeon? cotrina 4 338 11-11-2018, 06:37 PM
Last Post: cotrina
Exclaimation Here is what a Sleep Tech Supervisor told me about my recent sleep study MyronH 29 1,349 11-04-2018, 01:28 PM
Last Post: zzzlessinMS
  Sound Like Sleep Apnea?? Crippling Fatigue Ruining Life! zheshi 14 688 10-31-2018, 01:42 PM
Last Post: yrnkrn


New Posts   Today's Posts






About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.