MyApnea Survey Inadequacies

I finally got around to doing the surveys and was somewhat disappointed by what seemed like inadequacies in the design.

The following observations are based on vague memories and general impressions.

I understand that this series of surveys is a sequence of preexisting questionnaires but there is something wrong in how they connect and how they function in conjunction with one another.

In three or four of those surveys I felt that I didn't belong, that the survey was asking the wrong questions or offering the wrong answers.

One simple example is a comprehensive series of questions about snoring which I simply cannot do whilst I am using a CPAP machine, which is all the time. This survey (from memory) is well before any surveys to do with CPAP therapy or compliance.

There needs to be a clear delineation at the start for CPAP users so that surveys like the one about snoring could be bypassed or replaced by equivalent CPAP user queries.

The survey related to removing the mask presumes that it is only with intent or due to forgetfulness or neglect and not due to simply knocking it off during the process of sleeping. The wording or the frequency options needs to be adjusted.

The questions about compliance penalties/rewards were totally irrelevant in my world and I don't want anything to do with the system that invokes it.

Emotional consequences are too subjective and too easily misconstrued. These surveys do not effectively allow for real limitations both in practical life and because of other health issues and although there is a box for 'other' health problems I doubt that they are taken into account when the scores are being generated.

The medical advice surveys toward the end were inadequate and vague in view or their potential applications. They needed to be far more detailed and more purposeful.

I may be an oddball but I am most certainly not the only one and it would only take a few minor adjustments to make these surveys feel more relevant and comprehensive and less intent on policing compliance.

Very good points and ones I will bring to the attention of this research team (if they haven't already seen your post). It would help if others who take the surveys (any and all) would comment when they had suggestions or concerns like yours. Thank you!

I tend to agree that the design of the survey should probably provide different questions for perhaps three categories of participant: Those who are not being treated for sleep apnea Those who have just started treatment for sleep apnea (<1 month) Those who are currently undergoing treatment for sleep apnea

While there are questions later in some of the surveys that allow you to indicate whether or not you're newly diagnosed with sleep apnea and being treated, many of the preceding questions aren't applicable to someone currently in treatment (particularly with PAP). For example, I received my OSA diagnosis about a month ago and started CPAP therapy about three weeks ago. When the question asks something like "how much do you snore" or "how much do you stop breathing" over a period of the past month, it's hard to answer that question adequately. Before starting therapy? Or after? Or some combination of both since it spans the period in question?

I suspect that many who join the community here are either newly diagnosed or have just started therapy, so designing the surveys to accommodate these new participants would seem to have value.

thanks so much for these insightful comments. It is challenging to design a set of surveys to capture the full spectrum of experiences of people in the MyApnea community. We will try to reorganize the questions so they are presented more clearly for each specific stage of treatment. Many thanks-- these are very good points and we hear you!

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....

Fantastic feedback... thanks for listening!

I didn't mean to provoke this reaction although it speaks well of the team.

I had some time to kill in the dark hours before dawn and the surveys were something to do.

This forum (and this topic) has been yet another way to kill time before I went back to bed so there was no compulsion to "fix" the surveys.

For the following comments please remember that I have a very vague memory and no access to the surveys once they were done.

Obviously there are many constraints and a difficult balance to reach and I think the surveys are not far off that point.

I actually enjoyed doing the surveys because they were simple and succinct and yet protracted in the number and scope of questions.

I don't think it would hurt to extend the surveys but you certainly need to keep the questions simple.

Have you considered writing an introduction to the surveys defining your purposes. Usually, if I know the purpose of the team, I would know how to answer the questions. Or is that approach taboo?

Keeping the layout and questions simple is critical to your purposes and that is one reason why the staff member in the room is so beneficial because they can provide additional information when required.

I know it's a lot of work to set up but have you considered having an "Additional Information" tag for each (or at least some) of the online questions? Enabling you to keep the simplicity but still offer clarification for obtuse people like me?

Even without those considerations you could achieve a lot with just a slight shuffle and a few minor changes in the wording.

If I were in your shoes I would be very uncomfortable. :O

But if I were in your shoes, and I could ignore the pain, I would make a few minor adjustments then I would probably focus on getting more exposure and on expanding and clarifying the sections to do with information, diagnosis and treatment because they are the areas which, in my view, could deliver the most meaningful results. (Did I mention free chin straps for participants?)

I'm sure there are others less sleep deprived and much smarter than me who could offer more relevant suggestions.

As you have so tactfully stated you can't please everybody but you should be pleased with what you have already achieved. :)

Oh btw you can have the shoes back. They just don't match my outfit! :P

This was the result of a random search for 'most obscure' because I wanted to test the locked threads situation.

It will be interesting to see what impact this change will have.