HER2 Incidence by Geographical Location

[rhondalea]

At long last, the survey.

Considering the amount of time that has elapsed, you'd think it would be more complex.

http://www.surveymonkey.com/s/YJ27JNQ

I'm reluctant to post the login here in plain view, but if anyone wants to look at the results in their raw form, PM me, and I'll send you the particulars.

If I've missed something, please let me know, and I'll get it fixed.

[rhondalea]

Afterthoughts...

Not sure I should have included the town.
Wondering if I should've asked about residence in the 10 years prior to diagnosis.
Hoping others will offer constructive criticism so we can make this better.

[JennyB]

just completed. I too think town may be overkill especially as,hopefully, lots of countries will be included?

I just spoke to onc last week he said West Australia has a Her2 rate of 10% versus the Sudan with 25%? Interesting eh?

[rhondalea]

Oh, yeah, well, there's already a big functional problem: I didn't write the PR/ER status questions in a way such that they'll be useful to see if there's a higher incidence of a particular hormone receptor status in a given area.

As for the towns, the form template is set up with demographic information from which one can choose items separately. I figured that since it was already there, I might as well leave it in, but you're absolutely right--it's overkill.

[NEDenise]

Done!
Thanks, Rhonda!

[rhondalea]

Towns are still overkill, but I just discovered that I wasn't looking at the data correctly, so my comment about hormone receptor status is incorrect.

As soon as we have a few more responses (last time I looked, 23 of us had taken the survey), I'll start to compile the data. I think I can do it in Excel and then upload it to Google Docs...or something like that. I'll figure it out. And again, if anyone wants to look at the data within the account, just send me a message, and I'll send you the login.

I'm now on paragraph 3, and the actual point of this post is to bump the thread so more people will see it.

[Nancy L]

Are you interested in where we live today or where we lived when first diagnosed?

[rhondalea]

Hi Nancy,

First diagnosed is probably a more useful answer.

(Were I adept at survey construction, I'd likely have realized that what we want to know is where you lived when diagnosed and, more importantly, where you lived in the 5-10 years prior to diagnosis. Alas, I blew it. Edited to add: I would fix it, but by the time I realized my mistake, we already had responses.)

[carlatte7]

Haha- i've lived *here* my whole life so it doesn't matter for me! Interesting stuff-thanks!

[rhondalea]

Rough tally of the results so far. (The numbers in the first column match up with the numbers from the individual responses. I put them in so that when someone sees a mistake, it'll be easier for me to fix.)

If we want a large sample, posting the survey link to the HER2 forum at BCO is probably the next thing to do. I'm torn about that, though, because I have an idea that we could make it a little more complex and get such useful information as, say, age at diagnosis.

For the record, I'm finding this a lot more interesting than doing what I ought to be doing now that I've got enough energy to do anything at all. :)


Edited to remove graphic. Link to results, here:

https://www.dropbox.com/s/bmjt4nq4czo2dww/HER2%20Survey.docx

[Pray]

I think you Rock! Rhonda, I do appreciate the time and effort you are putting into this. Even more so the fact that you are enjoying it! Thank you! Thank you!

[JennyB]

Thank you so much for all this Rhonda I too think you rock!!

[rhondalea]

Y'all are so sweet, but I think "rocky" may be more apt at the moment.

As an example of that, I meant to ask Jenny about her onc's statistics, and then I just...forgot. Now that I remember, though...Jenny, can you ask him where he got those numbers? I've googled myself silly looking for a geographical breakdown for HER2, and no matter what search terms I use, I get garbage.

Anyway, here's a link:

https://www.dropbox.com/s/bmjt4nq4czo2dww/HER2%20Survey.docx

I didn't want to keep pasting updated lists, so I am sending you to my Dropbox instead, and I will let you know each time it grows. As of this morning, we have 36 responses.

If anyone has trouble with the link, please let me know.

[MikeF]

Just added Barbs info
Thanks;
Mike

[rhondalea]

Thanks, Mike.

We're up to 48 responses now. I also asked about posting the survey to BCO, and I'm waiting for a decision from the moderators.

[Pray]

Are we going to put this at the top of the her2 group so it can be seen all the time? Thanks again Rhonda your amazing!

[rhondalea]

We now have 63 responses.

I'm not sure if I mentioned this, but on Wednesday, I asked permission at BCO to post a link to the survey in two of the forums. I was told my request would be reviewed, so I'm waiting patiently for a reply.

I still can't find anything in Google, but I cannot fathom that keeping track of this is not being done by someone somewhere.

[LeahM]

added my info

[rhondalea]

Updated with your response, Leah, along with several more.

Y'know what would be nice, Nancy? Instead of sticky for just the survey, it might be helpful to have a sticky post with links to key information in these forums. A link to the survey could then be included in that post.

IMO, the least confusing way to do is to have one person responsible for the original post, which will then be updated as needed. Discussion can follow within the same thread, but it will be the original post to which others can be directed when they have questions about specific subjects.

I have no idea if what I just wrote makes any sense. I'm all a'boggle today.

[adelay]

My info added, thanks for doing this.

[JennyB]

Rhonda I have asked my onc for link to the article about Sudan etc he couldn't find it on his work computer but had the link at home from writing an article which used the data. I am hoing he gets back to me with the link this week and then I will post it for you.

Thank you for all you are doing

Jenny

[Vicki revised]

I was unable to check the hormone recep questions. Im ER/PR - andvim in Alabama

[rhondalea]

Jenny, you're a sweetheart. And who knows? If we get this information, we might be able to figure out just where to look for similar information.

Vicki, I have no idea why the survey wouldn't take the hormone receptor information from you, but I did add it to the results, so it's all good. It was probably just a blip on the site that prevented it, so if we're lucky, it won't happen to anyone else.

To all, we're now up to 74 responses. :) Now that we're on page two, I'll add links here as well.

The survey:

http://www.surveymonkey.com/s/YJ27JNQ

The results:

https://www.dropbox.com/s/bmjt4nq4czo2dww/HER2%20Survey.docx

The graphic I uploaded on page one is now obsolete, so I've deleted it.

[Becky]

I just did your survey but I wrote the city I lived in when diagnosed and not the city I live in now - I believe this is relevant.

It did not ask Her2

[rhondalea]

From the bottom up...

...the assumption is that the only folks completing the survey are HER2+. The original question that started this was just about geographical location, but I threw in hormone receptor status as a bonus question (so to speak).

As for geographical location...you have hit on the big weakness of the survey. I think we've had some discussion about this, either earlier in this thread or in the thread where the question was first discussed. My hope is that everyone will do as you have done, because that's what the survey should've asked for.

Live and learn. Next survey will be perfect. :)

[Emy]

Just completed...

[Cathya]

Rhonda;

I think this is a very interesting survey though not likely to address my concerns. My little town of less than 5000 people and the area surrounding which runs along the St. Lawrence River seems to have a very high incidence of cancers. For instance, when I was having treatment I knew of 3 other women who had inflammatory breast cancer and were in treatment in my town. I doubt there are many on the site but I hear regularly of new cases of various types of cancer in the young and old in my area.

Cathy

[rhondalea]

Hi Cathy,

I don't know if you've seen this, but you may find it useful:

http://statecancerprofiles.cancer.gov/


We're up to 99 responses, but I'm a couple or three responses behind.

[Pray]

Just thought I would give this another bump up. Thanks again Rhonda, 100 and counting. Very interesting!

[jaykay]

added my info

[rhondalea]

We're up to 113, actually, and I've discovered the defect in this idea--more than 100 responses requires a paid subscription.

I don't really want to subscribe to SurveyMonkey for a year, because I'm not going to use the subscription (unless...see below). I can use a monthly subscription to get the results, but then I'll need to terminate the survey when the month is over, so I don't want to do it right away.

If we decide that we want to do more surveys (for which we'll need ideas), then the annual subscription makes sense, and I'm happy to do it. Before doing that, though, I have to figure out who to ask for permission--something I should've done for this one, but it never occurred to me to read the TOS first (leaving me the need to ask both forgiveness and permission). If this is the only survey, then we'll need to pick a termination date, and I'll wrap it up. (There's no rush--the data's not going away, and I'd like those who don't log in often to have a chance to respond.)

Suggestions welcome.