Forum · Have you checked out the survey feedback?

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[-] SusanR +0 points · about 3 years ago

In completing the survey, I was very interested to see the feedback graphs available at the end of the survey (after completing the survey, find the questions you are interested in, and click to see how your responses to compare to others). I was surprised to see how many members of our community report insomnia and depression! This brings up the complexity in treating sleep apnea, and the need to make sure that the many health needs of patients with sleep apnea are addressed comprehensively. What do you think about the survey graph responses?

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[-] Ruby +0 points · about 3 years ago Sleep Commentator

I find them interesting and informative. A good addition to a survey.

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[-] BillT +0 points · almost 3 years ago

I found them entertaining, but not particularly enlightening. Since enrollment in this site is "random", I can't tell if we we have an statistically even group of respondents.

Once you guys get an adequate statistical sample, I'd be very interested in seeing some analysis. Specifically, is what I experience symptomatically an outlier or mainstream? How were these questions selected? Are they all significant contributors? Do they mask other issues? Are they red herrings?

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[-] SusanR +0 points · almost 3 years ago

Great questions!

First, we are working on improving the content of the feedback. We will be soon posting some sample feedback graphs to get your input. Please let us know which are most useful.

The initial questions we chose were selected based on several factors: patients and researchers prioritized areas of most interest to them; we had requests by the Patient Centered Outcomes Research Institute to collect some information that would allow patients with different health conditions to be compared; and we chose the instruments we knew in these areas with the best published validation. In these first surveys, we tried to pay special attention to experiences getting diagnosed, the quality of the health care experience, and symptoms of sleep apnea. We also included questions on family history and other health problems. As we continue to develop the network we will add more surveys, add the ability to complete daily diary type information and upload device data to track health parameters, and also ask everyone to do some follow up surveys. Please let us know what questions you think would be useful to include in the next round of surveys!

Enrollment is indeed a "convenience" sample. If we can enroll many 1000s of patients, however, we will reduce the likelihood of bias. Tell people you know with sleep apnea to join and increase the numbers!

We work with some excellent statisticians, so we will also be sharing ways for you to better understand the information you provide.

Again, thanks for your support and great comments!

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[-] CharmingTanSparrow4349 +0 points · over 2 years ago

Recently I realized that several of my medical diagnosis are connected to a malfunctioning central nervous system. Central Apnea, Fibromyalgia, IBS, ADD, and most recently Charot-Marie-Tooth disease.

I am wondering if CMT (genetic failure) could actually be the root cause for for Central Apnea.

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[-] DanM +1 point · over 2 years ago Sleep Enthusiast

Hello @CharmingTanSparrow4349. CMT disease has been reported to be associated with both central and obstructive sleep apnea. Restless legs syndrome also has been described. Problems with neuromuscular function from CMT are discussed as likely contributors to the sleep problems. Two references are shown below. You may want to discuss this with your doctor or a neurologist, and talk about the best way to manage these disorders. Hope this information is helpful:

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