Acoustic Neuroma Survey

[fbarbera]

Dear Fellow AN Patients,

A couple of days ago I came across this survey of AN patients that is being conducted by Dr. Ajay Niranjan of the University of Pittsburgh and Dr. Jason Sheehan of the University of Virginia and the New Jersey Acoustic Neuroma Association: 

http://www.ansurvey.com/

The survey takes about 10 minutes to complete.  I filled it out because I believe this kind of data can be extremely helpful for future AN patients trying to evaluate treatment alternatives and manage expectations regarding post-treatment outcomes.

I figure I'd post it here in case others would like to fill it out as well.

Regards to all,

Francesco

[leapyrtwins]

Francesco -

I took the ANA survey - I think it was just last year? - is this the same one?

Jan

[Kaybo]

Jan~
I came across a DIFFERENT one from the ANA survey and I kind of think that it was this one...

K

[fbarbera]

This is separate from the ANA survey.  I filled out the ANA survey a while ago, but if I recall correctly, this new one is more detailed.

Francesco

[sgerrard]

Just filled it out. For a while it was showing 30% done, and I thought it would take too long, but then it jumped to 99% done. I guess the rest was if you had multiple  treatments or major issues post treatment.

Every little bit of research helps!

Steve

[Jim Scott]

Francesco: 

Thanks for the heads-up on this survey.  I filled it out but found it a bit redundant because I had surgery + FSR and it asks the exact same questions for each treatment, as if you didn't have both.  That should be addressed.  Otherwise, fairly complete and, one trusts, useful in the future treatment of acoustic neuroma patients.  I consider it worth my time (about 15 minutes).  Besides, how many surveys ask about your AN experience?  This was a first, for me.   

Jim

[lori67]

This one was definitely different than the ANA one from last year.  It only took me about 10 minutes.  If it helps someone down the road, then I consider it 10 minutes well spent.

Thanks for passing this on Francesco!

Lori

[JerseyGirl2]

I thought it was a good survey, and it just takes about 10 minutes (if you've only had one treatment). It certainly touches on a lot of the subjects that are discussed on this forum.

Catherine (JerseyGirl2)

[kimbo]

This is not about the AN survey but relates to statistical information.  I have been tracking the ANA membership numbers for a period of 1 month because I noticed on a daily basis new members are joining.  There has been an increase of 82 members from 12 October - 12 November.  I know all memberships are not people diagnosed with an AN, some are undiagnosed, some think they might have one and are searching for symptoms, some are carers and others who knows.  I imagine though that the majority are AN diagnosis.  I thought the increase of 82 members in 1 month was pretty amazing; if this was the monthly average this would total 984 memberships per annum.

Kimbo.

[ppearl214]

This is not about the AN survey but relates to statistical information.  I have been tracking the ANA membership numbers for a period of 1 month because I noticed on a daily basis new members are joining.  There has been an increase of 82 members from 12 October - 12 November.  I know all memberships are not people diagnosed with an AN, some are undiagnosed, some think they might have one and are searching for symptoms, some are carers and others who knows.  I imagine though that the majority are AN diagnosis.  I thought the increase of 82 members in 1 month was pretty amazing; if this was the monthly average this would total 984 memberships per annum.

Kimbo.

Hi Kimbo,

Interesting that you are noting this. To me, it's an interesting phenom as we have the occassional spam user that logs onto/enrolls on to the site, as well as trolls (check internet lingo).  then, the ANA tracks paying members, so that is a different number all together.

Me thinks that the new users total amt you note may be very erred due to spam/trolls/phishers, but hey, that's just my thought.

Back on topic, I did take the survey. Thanks Francesco for sharing this!   Based on who is doing the survey and the type of info they seek, my hope is that the raw data they compile, as long as everyone answers honestly, will be fruitful for future treatment options and a better understanding to what AN patients endure.  again, just my thought.

Phyl

[leapyrtwins]

Me thinks that the new users total amt you note may be very erred due to spam/trolls/phishers, but hey, that's just my thought.

I think you're correct about this, Phyl.

Jan

[fbarbera]

Cheri, I'm not sure about availability of results.  It looks like they will be keeping the survey open through the Spring 2009.  Then there will probably be a period of compiling and analyzing the results.  I also hope they get the results out quickly.  Maybe I'll contact the co-sponsors of the survey and check with them. 
Thanks everyone for participating.  I hope they get enough participation to generate genuinely meaningful results.
Hope everyone is doing well.  Francesco

[sgerrard]

I thought the increase of 82 members in 1 month was pretty amazing; if this was the monthly average this would total 984 memberships per annum.

According to the member listing, we have about 598 new members so far this year. Not that we're counting or anything.

(The member listing can be viewed by clicking on the member count at the bottom of the main page. Click column headings to sort.)

For some reason the member listing shows 3009, while the counter shows 3443. Not sure if that many have been deleted in the mean time, or what. Based on the posting count, out of that 3009 there are 1193 who have never posted, and  405 who have made only 1 post. So the spammer/phisher theory may be a good chunk of it.

Back to the survey: Francesco, even if they can't publish the results until they have analyzed them thoroughly, is there a way to find out how many responses they got? Just that info would say something about how useful or interesting the results might be.

Steve