An afib survey? Group effort?

In my professional life, I do a lot of surveying and polling.

What would you all think of me putting together a survey to gather AF data?

And could we get enough people to participate that we would get meaningful data? (statistically speaking)

So here's an example of the kind of question that would be in the survey.


Is the following substance a trigger for your AF?

1-10 with 1 (not a trigger) to 10 (definitely a trigger) or Not Applicable

Alcohol
Heavy Meals
Late Meals
Caffeine
Exercise
Endurance Exercise
Intense Exercise
Vitamin D
Magnesium
etc

After each item above there would be an open entry for amounts, dose level, frequency, duration and comments.

It would take a lot of input before release so we can capture as much information as possible.

Of course we'd capture anon data (age/race/onset/etc) and also focus on interventions.

Any other ideas? I have a Survey Monkey subscription so can provide that.

Once there was a straw dog built and shared, I think a lot of good ideas for capturing data would come from the collective intelligence of this group. Hopefully, it could help people and especially newbies.

The raw data (once scrubbed (e.g. redaction of accidental identity disclosure) will be shared with the group so they can also run analysis also.

Big job! Including genetics?
I'd do the survey but not expecting much, but one never knows?

Be happy to participate. Thanks

I've got no objections to you creating a survey like that off-site, but I would suggest adding the triggers I actually believe in:

• Dehydration, even if unrecognized, which makes it unreliable to self-report
• Electrolyte disturbances, particularly low potassium levels, which makes it difficult to self-report
• Hypertension

So I think you'll miss most of the real triggers because most people have no easy way of recognizing them. But go right ahead. I think doing it well will be a good deal of work but if you're willing to take it on by all means do so.

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Carey
I've got no objections to you creating a survey like that off-site, but I would suggest adding the triggers I actually believe in:

[*] Dehydration, even if unrecognized, which makes it unreliable to self-report
[*] Electrolyte disturbances, particularly low potassium levels, which makes it difficult to self-report
[*] Hypertension

YES - will include any input

So I think you'll miss most of the real triggers because most people have no easy way of recognizing them. But go right ahead. I think doing it well will be a good deal of work but if you're willing to take it on by all means do so.

It could be some work but I am hoping to benefit as well. Still in AF right now.

I think the long pole will be how many people use the forum and might participate ?

Any idea how many unique users and views per week?

Be happy to participate

Me as well.

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NotLyingAboutMyAfib
Any idea how many unique users and views per week?

Good question. I'll try to get you those numbers.

No downside to participating and we might all learn something.
I'm in.

Identifying triggers is a challenge, many times because there may be no trigger at all, just a coincidence. I documented 5 years of episodes long ago and after 200 or so of them, the only trigger that I suspected was TWO alcoholic drinks. Never one, and the percentage of episodes possibly from drinking two drinks was probably less than 5%.

Clearly there are things that can and will increase the likelihood of having an episode of afib, but at best, it's a guessing game for most of us typical afibbers. As I recall, I had a few episodes when there was a full moon, maybe more than I had after two drinks.

However, I don't object to the survey.



Edited 1 time(s). Last edit at 04/08/2020 01:24PM by Ken.

Carey - thank you. Getting the numbers to have some statistical significance is important. While very helpful so far we have a lot of N=1 - it's hard to sort through.

Ken - agreed - AF definitely multi-causal but many (very fortunate people) have found simple interventions. The success stories with ginger as an example - I'm also taking it now but that unknown prime mover isn't letting up. Yet. (grin)

Everyone else - thank you and please once the survey draft is up please help refine and make suggestions to improve it.

Once Carey can provide numbers I'll get started.

I recall that Hans (the founder of this site) had a survey pertaining to getting AF, I remember I did participate, didn't seem to help, but I am sure it won't hurt if you want to do it.

L

I'll participate!

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Elizabeth
I recall that Hans (the founder of this site) had a survey pertaining to getting AF, I remember I did participate, didn't seem to help, but I am sure it won't hurt if you want to do it.

L

Liz is correct. Hans used to do periodic surveys on various afib topics and publish them in The Afib Report. I think this search will find all of them in the archived PDF's of The Afib Report.

Edit, for those who are relatively new here, there is a wealth of information in the back issues of The Afib Report. Hans' first book, though old, is still a good initial resource as is his updated book on Thrombosis & Stroke Prevention.



Edited 1 time(s). Last edit at 04/08/2020 04:54PM by GeorgeN.

I'm in

I'm 100% with Ken's comments!
And count me in too.

Yes, NotLyingAboutMyAFIB, (in writing replies to your posts I think I'll use an abbreviation of your username if you don't mind as; NLAMA, for brevity's sake :-), there are a lot of good survey's I'm sure you will find interesting already posted in the archives on a variety of AFIB related topics, as Liz and GeorgeN noted above. These surveys are all still found in past issues of The AFIB Report newsletters. During Hans Larsen's long career as a chemical engineer in Canada. A large portion of his job was to research and write up surveys, studies and meta-analysis for his company on various topics of interest to the chemical industry.

A couple years after Hans created this very special online resource dedicated to better education and advocacy for AFIB patients in 1999, he quite naturally used his many talents as a researcher starting, I think it was in 2003 to 2004 or possibly even earlier, to create the first of a good number of surveys ... though the date slips my mind this late Wednesday evening. Hans' periodic surveys continued on into 2009 possibly 2010. You can find them all, freely accessible, in the archives of The AFIB Report.

Your kind offer NLAMA to create a new survey for the forum is welcomed and please send me your cell number by PM and I'll be happy to fill you in with a bit of history you might find helpful as a context for the past surveys as well.

I look forward to speaking with you and we appreciate your enthusiasm!

Cheers!
Shannon

Shannon,

I will. I am hoping that via a group effort we can get a pretty good survey together to capture a lot of data that might help people with what to do with their afib especially those that have yet to find the magic bullet.

The main thing is that we get the numbers to have some statistical significance.

Normally, I am against long comprehensive surveys but I think AF is enough a thorn in the side of those that have it they would be willing to provide responses that might take 10-20 minutes for people to complete.

We'll get a handle on it over time.

NotLyingAboutMyAfib said: I am hoping that via a group effort we can get a pretty good survey together to capture a lot of data that might help people with what to do with their afib especially those that have yet to find the magic bullet. The main thing is that we get the numbers to have some statistical significance.

Statistical significance? A bunch of subjective guesses as to what triggered afib could be very misleading to those that are looking for the "magic bullet". Beyond what Carey mentioned:
[*] Dehydration, even if unrecognized, which makes it unreliable to self-report
[*] Electrolyte disturbances, particularly low potassium levels, which makes it difficult to self-report
[*] Hypertension

Little else will be of much value - In my opinion. We all want to have answers, but few exist and most are speculation. A little recollection of all the "magic bullets" suggested or tried on this forum are endless. I don't mean to be disruptive, and I admire those that make the effort to find answers and help others, but I felt I needed to offer my opinion. Good luck with the survey.

We won't know until we try.

The survey will not just looking for triggers but interventions (failed and successful) and other data.

One of the problems I can anticipate is that it's possible that someone having found a working intervention no longer participates actively or at all in this forum or any AF forum.

So newer respondents still in AF might lean towards "i don't know" or only offer negative responses to successful interventions having not yet found one. But we can break those cohorts out with different queries.

At the same time, a well designed group effort might bring up an intervention they hadn't considered.

We'll try to look at all angles.

I will participate. My known triggers IMO were dehydration and Anxiety, Stress.....

It's certainly worth doing this endeavor. From my perspective, AFIB treatment and response could be improved upon, if their was better stratification of AFIB patients into subcategories. Is the AFIB Vagally or Adrenergically mediated (Triggered)? Is the patient in the relatively "Lone AFIB" category or not? Are they sedentary, or highly athletically active?
Is there a Family history of AFIB?

For example, from what I can tell, Electrolyte Balancing seems to help the subcategory of physically active Vagally-Mediated LAF'ers, more so than in comparison to the general AFIB population. Drug selection whether Beta-Blockers or Anti-Arrythmics can be better utilized dependent upon which subcategory someone falls into.

Hans previously courageously did this in his Surveys, and a new effort is warranted and welcomed. We can and should educate ourselves here and through the Internet, in order to counter the tendency to being deleteriously lumped into one overly-generalized AFIB group by our Health-care providers.

Thank you anti-fib.

Any of the old timers know exactly where those surveys are? I looked a bit but didn't see any obvious clues.

I've been very busy researching Covid as it's the bigger fire right now.

Thanks for any help.

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NotLyingAboutMyAfib
Any of the old timers know exactly where those surveys are? .

The "Afib Report" archives are PDF's. This search of the archives of the "Afib Report" should find them.

Excellent George - that works. A lot of good ideas in there to use for template.

Carey - what number of people can be reached out to for participation?

Thanks

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NotLyingAboutMyAfib
Carey - what number of people can be reached out to for participation?

Well, that's hard to say. The site has thousands of registered members, but reaching out to them individually by a mass email or something like that would be a major undertaking we're not prepared to do. The vast majority of them are lurkers who read and never post, so you're unaware they exist. Realistically, about all you can do is make a post calling for participants and hope a bunch of people respond. We're willing to help you do that, but we don't really have a mechanism for handling such a poll. I would suggest something like surveymonkey as the best solution.

I have an SM account for my consulting work so it's not a problem for me to run the survey.

I think I want to divide into an internal group (us only) and then create a public survey that I can send out and try to get others to participate in.