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RebeccaR

RebeccaR
Joined Dec 2016
Bio

On the MyApnea staff team working to improve the lives of sleep apnea patients

Boston, MA, USA

RebeccaR
Joined Dec 2016
Bio

On the MyApnea staff team working to improve the lives of sleep apnea patients

Boston, MA, USA

Adding to SusanR's….. We really appreciate getting feedback from people who complete the surveys. Our research team worked with patients when we designed the surveys, but there are always confusing bits or "logic" that we don't catch, so hearing from you all is priceless! It’s also true that any survey is limited in what it captures and how it captures it. It's almost impossible to design a survey where no one will take issue with at least one question, or the answer options available. But with that said, we can always improve and are determined to do so.

I reviewed the snoring question: “Over the past 4 weeks, how often have you snored?” There are other similar questions “Over the past 4 weeks, how often do you have times when you stop breathing during your sleep?” and “Do you ever experience a desire to move your legs because of discomfort or disagreeable sensations in your legs?” These types of questions help indicate whether people are symptomatic, regardless of diagnosis/treatment status. I can see how these would be confusing to answer if you are already diagnosed and treated… or if you are newly diagnosed and your symptoms have changed very recently. Our team is going to look through the questions again and consider some changes. Let us know if you have any further thoughts on the matter.

I will also add that it’s extra challenging to fill out a survey when you can’t ask a staff member clarifying questions in person. For example, I’ve found that when we do research in person in the community, we are most successful when participants complete surveys with a staff member, one on one, in a private room-- something that is clearly not relevant to the online research model! Do you have any ideas for how to bridge this gap (other than sharing feedback through the forum)?

Thanks again for posting. We'll be sure to post on the forum the next time we make any changes to the surveys. In the meantime, thank you for filling out the surveys. Even though the surveys aren't perfect, your willingness to participate is enormously valuable and do help researchers advance knowledge about how sleep apnea impacts the lives of patients and how we can improve care. As an FYI we are starting to look at initial findings from the survey data and look forward to sharing the results with MyApnea this spring!

Keep in touch....