We're releasing new survey reports - we want your feedback!

MyApnea.Org is patient-powered, and we want your feedback!

Following our massive update to the forum system, we've spent the past couple weeks revisiting the reports that you see after completing surveys. Currently, they are very data driven. However, we want to tailor them to the needs of our members, and use them as a way to gain great information about our community and sleep apnea in general.

In the following posts, you'll find the concepts for the new survey reports. Please keep in mind that these are not accurate reports (the percentages and results are not based on actual data), but concept designs to show how we plan to present the information in this redesign.

Below, we’ve listed a few guided questions to help us understand your thoughts. Since MyApnea.Org is a patient-powered network and we value your feedback so greatly, everyone who posts on this thread with substantial answers to these four questions will receive an entry into a drawing for a $50 Amazon Gift Card at the end of this week!

1. Do you think these summaries of key information are useful? Will they help you understand your sleep apnea experiences better, and/or better help you relate your experiences to the rest of the community?

2. Are these new reports easier to understand than the current bar charts?

3. We plan on leaving the current reports (with the bar charts) available to view for any member who wishes to learn more detailed information. How likely are you to use these detailed reports?

4. Please let us know any other comments/thoughts about the new survey reports.

Here's one example of the new reports, with others in the following posts:

Note: the old reports (the current bar charts) will still be available!

About My Family

My Sleep Pattern

My Sleep Quality

My Quality of Life

My Sleep Apnea Report

Sleep Apnea Treatment

My Risk Profile

1. These summaries are GREAT! I love infographics, and this is interesting, useful information.

2. MUCH easier to read & understand than the bar charts.

3. I'm not terribly likely to use the bar chart reports - these convey enough information, and do it clearly.

4. These reports are much more concise and are presented in a more interesting and engaging manner.

1. Do you think these summaries of key information are useful? Yes Will they help you understand your sleep apnea experiences better, and/or better help you relate your experiences to the rest of the community? No

2. Are these new reports easier to understand than the current bar charts? Both are useful

3. We plan on leaving the current reports (with the bar charts) available to view for any member who wishes to learn more detailed information Great. How likely are you to use these detailed reports? I may use them

4. Please let us know any other comments/thoughts about the new survey reports. Anything that furthers education and allows patients to become empowered with their health is good.

Do you think these summaries of key information are useful? Yes. Will they help you understand your sleep apnea experiences better, and/or better help you relate your experiences to the rest of the community? Possibly.

Are these new reports easier to understand than the current bar charts? Yes

We plan on leaving the current reports (with the bar charts) available to view for any member who wishes to learn more detailed information. How likely are you to use these detailed reports? Fairly likely.

Please let us know any other comments/thoughts about the new survey reports. Try to construct them to make them easily visible without a lot of scrolling. There's a lot of fixed areas in this website, leaving a fairly small area to view text or charts without moving up & down, back & forth...

1. Do you think these summaries of key information are useful? Will they help you understand your sleep apnea experiences better, and/or better help you relate your experiences to the rest of the community? Yes the summaries of key information will be very useful. Yes they will help me understand my sleep apnea experience better and will help relate my experiences with the rest of the community.

Are these new reports easier to understand than the current bar charts? Yes they are a whole lot easier to understand than the bar charts.

We plan on leaving the current reports (with the bar charts) available to view for any member who wishes to learn more detailed information. How likely are you to use these detailed reports? I will use both reports they will be helpful.

Please let us know any other comments/thoughts about the new survey reports. New survey report will help us understand our apnea and health better.

I haven't a clue as to how to begin this survey!

Hi Kyle,

You asked. I will answer.

1. Yes, I do think these summaries of key information are useful.

2. I do not have any difficulty reading the bar graphs, but I think the new format might be more visually appealing and understandable to a wider range of respondents.

3. I looked at all of the bar charts as I completed the original set of surveys. I expect that I would continue to do this, because I am a detail-oriented person by nature.

4. Other comments:

   • I am not familiar with the Promis Sleep Distirbance Scale. I would be interested in knowing more about it.
   • It seems like these surveys are simply collecting basic data. To me what is missing is not asking people about what interferes were their compliance with CPAP, especially at 30 days, maybe earlier. CPAP in known to be an effective treatment for OSA, yet there is a relatively high level of non compliance. To me, finding out more about non compliance and addressing the issues could save lives and improve the quality of people's lives. I was disgnosed with OSA on January 26, 2015. Because of my background as a nurse, I took the results seriously and decided to work through whatever issues and obstacles arose. I have run into many barriers to compliance including obtaining equipment, issues related to the proper use of the mask and chinstrap, issues related to emptying and cleaning the humidifier (it looks very simple, but not really), finding out who could help me resolve those issues, finding out the plan for followup (who, what, when & where) was never mentioned to me. I have been using CPAP for just 24 days now, but the issues that have come up have been almost daily. One problem that I had was using the CPAP machine, yet having nightly AHI's that were close to my baseline with no treatment. One night I had a particularly bad night, I perservered and found out the next AM that my AHI was worse than my baseline with no treatment. I was able to figure out that I probably needed an adjustment in the pressure. I am thankful that I was able to figure out that I needed an appointment sooner than the 5 week followup. These issues may seem easy enough to resolve for people who are very familiar with CPAP, but not so for a newbie. I don't think my experience was very unusual, but after just 24 days of CPAP, I can see so many reasons why people might conclude that it is not worth the bother. Sorry about that very lengthy respnse, but to me, the key is with clinical reasearch moreso than collecting demographic data. Just my opinion. Thanks for asking. FYI, there is a typo in the line about night owls.

2sleepy ....hoping to remain compliant and get positive results from CPAP

1. These are useful to see how I relate to others. I hope they will help me understand my SA experiences better. There are a lot of us SA sufferers out there.

2. These new charts are fine and easy to understand. The bar charts were OK too.

3. I will look at them initially but I am not sure if I will go back and review them.

4. Any information is good. It is important to keep current on any medical condition to see if there are any new discoveries or treatments.

1. I think they cut to the chase faster. Definitely more easily digestible, and less to sift through. Seeing where I fit into the grand scheme of people reporting is interesting, but I'm not always sure what to do with that information. I know from various doctors that I am younger and not as heavy as a lot of people with sleep apnea, so in a sense I feel like I'm already an outlier in some ways. I think since everyone is different, how we respond to treatment is very individualized. I have had a fairly difficult path to get to where I am in my treatment (first being diagnosed with obstructive, not being heard about continuing tiredness, finally after years of complaints and multiple doctors/suppliers finding out I also have centrals), while others may have had easier or harder times. I feel like the individual stories might be more useful to me to hear than demographics, for example. But others might be looking to see where they fit in.

2. I think they're definitely clearer, or at least more concise. As a starting point, they're good, and then if people want more they can dig into the more detailed ones.

3. If I was sure of what I should do with them, I would use them. It's a lot of information, so I can see how it would be useful, but I'm not sure how they're useful to me. (I imagine it's quite helpful to the researchers.)

4. I think as a snapshot of "here's where you fit into all this" they're good. Maybe a little guidance as to how this can aid us in our treatment would be useful.

I am a data person myself and relate best to the concise presentation of the most data. I do like it when a lot of data is preceded by a short summary that enables me to quickly see if I am interested in reading further or would prefer to scan over that bit and circle back to it later. I like the overview that shows how my answers fit within the bigger picture.

Sunspotimages,

I think the new survey format is concise and easy to understand. I find the information helpful and worthwhile, although once I have absorbed the information, I probably won't need to spend any significant time going back to the data. New sleep apnea patients (I have been using my CPAP machine every night for over 11 years) will likely find the information useful, but from my perspective, I simply want to keep up with new information, theories, procedures, and new equipment options.

1. Yes! I think it is comforting and reassuring to know who your experiences compare with the community experiences!
2. Yes, these reports are most definitely more user friendly.
3. I most likely would not use the detailed reports as I prefer an easier to understand summary.
4. I like the graphics and lettering scale size. I am also not familiar with the PROMIS Sleep Disturbance Scale and would like to learn more about it!

1. Do you think these summaries of key information are useful? Will they help you understand your sleep apnea experiences better, and/or better help you relate your experiences to the rest of the community?

They do interest me and I like how they're presented. I feel I have so many other health issues that I don't think it's useful for me to compare myself with the rest of the community. I have osteoarthritis, which interferes with my sleep. I also have bruxism. Actually, just getting to sleep at night is stressful! I should do my sinus rinse for my allergies (am also post-septoplasty by 6 months), I should use my accupressure mat and put lidocaine patches on for the muscle spasms from the arthritis in my neck. A hot bath also can help with this. I always wear my bruxism guard. I take muscle relaxants and melatonin for sleep. I'm supposed to wear a boot for plantar fasciitis but there's a point at which it's all just too much. So, with all this, I am sure my answers are influenced by many more factors than most people deal with.

1. Are these new reports easier to understand than the current bar charts?

I don't know that I paid attention to any of the bar charts to be honest. Sometimes bar charts are easier for me, sometimes I appreciate fancy infographics. It depends on how tired I am and how much mental processing I can handle. Sometimes bar charts are just less visually assaulting.

1. We plan on leaving the current reports (with the bar charts) available to view for any member who wishes to learn more detailed information. How likely are you to use these detailed reports?

I think they're more understandable than bar charts, but I also do like bar charts. For me, there are days when too much visual input is confusing and that would be when I'd get more out of the bar chart. Honestly, I'm often too tired to really deal with data the way I used to be able to. I'd love to say that these are great and I'm really excited but I often just feel overwhelmed and overloaded so I don't know that I'd make use of the data.

1. Please let us know any other comments/thoughts about the new survey reports.

What WOULD really interest me is individualized tracking and feedback. I saw that incorporated into a research project on Fibromyalgia. The system actually took the variables (such as pain, fatigue, hour you went to bed, what time you last ate) and tell you something like, "You have less pain when you go to bed before 11pm." I found that very motivating and it helped me change my habits. This isn't the same kind of data you are collecting, but it's what I would find most useful, personally!