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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Quality of Life Survey, Part One
        
(Message started by: Pinkfloyd on May 18th, 2004, 7:10pm)
Title: Quality of Life Survey, Part One
Post by Pinkfloyd on May 18th, 2004, 7:10pm

For those of you that have been waiting for the Quality of Life Impact Survey, Part 1 is ready and can be found at:
http://www.clusterbusters.com/phpsurveyor/index.php?sid=5

Please excuse the delay.
NECH decided not to do the survey because, from what I was told, it required too much time/red tape for them at this time. Clusterbusters has designed/written the survey due to it's importance in not only the Harvard study, but the studies and trials that will follow.  It (the QoL) is for everyone to fill out, whether you used the psilocybin treatment or not.  This data will also be forwarded to Dr. Halpern at Harvard and Dr. Sewall for use in the article they will be writing. It's time the entire story be told.

There will be one additional section of this Quality of Life Impact Study and it will be released shortly. Part 2 is now in its final editing. Please do NOT wait for part 2 before completing part one. They are separate and the data collected and collated separately for specific purposes.
Part one is a long survey and will give everyone an opportunity to tell a very strong story. You may have seen some of the questions previously and some may not seem important, but the answers on this survey are needed to be able to compare against the rest of the data collected from this survey.

The data collected is very important for the work being done at Harvard with regard to the clinical trials. As always, the information is essential for this study whether you had a successful, partially successful, or unsuccessful outcome.  
We will be able to tabulate results and cross-referenced findings.  Anything that makes the job of the researchers easier, saves money and saves time. Time that people won't have to spend suffering down the line. Maybe your information will take one day off a friend's grandchild's cluster cycle or maybe he'll be able to get a prescription to stop a cycle one day before it even starts. Maybe it will be your grandchild....maybe your child. I think it's worth it.

This information is also being compiled for work being done with other governmental agencies and additional issues related to the end goals of finding first an effective treatment for all, and an eventual cure. We need your help on this project. When I say "we," I mean everyone that suffers from clusters or will suffer from clusters in the future. As you know, a person’s entire family suffers from clusters when one person is afflicted with them.  Want a part in helping yourself, your family, a
million people that you are connected with through the suffering caused by cluster headaches? Here is that chance.

In closing, please  complete the surveys.  You have all suffered the devastation that cluster headaches bring into your heads, your hearts and your homes. These surveys will be used to slow down and some day stop, the spread of such devastation.

Thank you  
PF  
www.clusterbusters.com
Title: Re: Quality of Life Survey, Part One
Post by manana on May 18th, 2004, 7:19pm
This information is also being compiled for work being done with other governmental agencies and additional issues related to the end goals of finding first an effective treatment for all, and an eventual cure.
[/quote]

Just out of curiosity, what governmental agencies?
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 18th, 2004, 7:44pm

on 05/18/04 at 19:19:33, manana wrote:
This information is also being compiled for work being done with other governmental agencies and additional issues related to the end goals of finding first an effective treatment for all, and an eventual cure. Just out of curiosity, what governmental agencies?


;) Well, if you thought that might be a clever disclaimer so I could compile all the personal information and forward it to local, and federal law enforcement agencies, you can relax. It's not for them.
This will be used for work with the FDA, the NIH and congress among others that we feel can help.
Additional information on its use can be found on the survey itself.

PF
Title: Re: Quality of Life Survey, Part One
Post by BlueMeanie on May 18th, 2004, 8:26pm
Survey done.

The questions on out of pocket expense is very difficlut to answer. It read since getting clusters. No way can i even come close to out of pocket expense for 25 years. Also, how in the heck do I know what it cost the insurance company. No idea. I did the best i could though. Hope it helps.
Title: Re: Quality of Life Survey, Part One
Post by vig on May 18th, 2004, 8:37pm
done
Title: Re: Quality of Life Survey, Part One
Post by Kevin_M on May 18th, 2004, 10:43pm
Wow, insurance payments were WAY up there.

Ok.

Kevin M
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 19th, 2004, 1:15am

on 05/18/04 at 20:26:30, BlueMeanie wrote:
Survey done.

The questions on out of pocket expense is very difficlut to answer. It read since getting clusters. No way can i even come close to out of pocket expense for 25 years. Also, how in the heck do I know what it cost the insurance company. No idea. I did the best i could though. Hope it helps.


It can be difficult. I estimate mine on averages that I always had to add up for my 1040 every year (for over 20 years) Add in 4 hospital stays that I know how much they cost because I always hit my max out of pocket. I was always on a 20/80% insurance. So....I think most people will be shocked at not only what they paid but what their insurance companies paid out, if they were lucky enough to have one. Being self employed, mine just became too expensive in the end because it not only jacked up my cost per month, but costs for all my employees. (I didn't figure in that amount although I suppose I could have since it ALL came out of my pocket)

Thanks to everyone taking the time to complete them.

PF
Title: Re: Quality of Life Survey, Part One
Post by Roxy on May 19th, 2004, 1:38am
uh...Bob.....

Now I know this is going to sound like a really bad blonde moment, but.....

I got halfway through the survey, the phone rang and when I came back, the survey was gone.  So, how do I finish filling it out????

:-/
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 19th, 2004, 1:59am

on 05/19/04 at 01:38:46, Roxy wrote:
I got halfway through the survey, the phone rang and when I came back, the survey was gone.  So, how do I finish filling it out????

:-/


I hope it wasn't someone selling aluminum siding!!
I've put in a call for help from the SurveyMASTer. It may have gone to "blond heaven" where many of us hope to end up some day!!!  ;;D

Bob
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 19th, 2004, 2:11am
Mast says it's lost and you should stay off the phone!!!! LOL  ;;D Holding plastic up to your ear for too long has been shown to cause tinnitus in lab rats!

Starting over should make the first half so much easier the second time.

PF
Title: Re: Quality of Life Survey, Part One
Post by bobkip on May 19th, 2004, 3:44pm
WTF Tried it, hit the submit and it said I didn't answer all the required questions,  wnt back, n/a's some blank "other"s, same thing.
Kip
Title: Re: Quality of Life Survey, Part One
Post by Prense on May 19th, 2004, 6:27pm
Done, thanks PF!
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 19th, 2004, 7:27pm

on 05/19/04 at 15:44:39, bobkip wrote:
WTF Tried it, hit the submit and it said I didn't answer all the required questions,  wnt back, n/a's some blank "other"s, same thing.
Kip


Well that probably really sucked. You sure you have clusters? We have a built in sniffer to see if you are a member of any migraine message boards!
;) just kiddin

Must have been one in there that wasn't completed in some way or some glitch on the form that didn't accept your answer. I know Mast built in quite a few "required" fields. Maybe she can offer some advice.

Very sorry about that Kip
PF
Title: Re: Quality of Life Survey, Part One
Post by Roxy on May 19th, 2004, 7:50pm

on 05/19/04 at 02:11:21, Pinkfloyd wrote:
Mast says it's lost and you should stay off the phone!!!! LOL  


She just said that because I was probably talking to her.....LOL.

I'll be a good girl and go do it again..... ;;D
Title: Re: Quality of Life Survey, Part One
Post by TxBasslady on May 19th, 2004, 10:26pm
Okey dokey.........I did it.

However, one of the mandatory's was relating to CH and the workplace.  I am retired....it wouldn't close the survey till I went back and checked a box.....so.....I LIED !    LMAO

Yeehaw !!!!!

Jean
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 20th, 2004, 1:20am

on 05/19/04 at 22:26:58, TxBasslady wrote:
.....so.....I LIED !    LMAO

Yeehaw !!!!!

Jean


tell ya what...take tomorrow off with pay!

I hope your answer fit for your tournament fishing.

Thanks Jean. I'll see if we can fix that.

PF
Title: Re: Quality of Life Survey, Part One
Post by JDH on May 20th, 2004, 8:37am
Did it.
Case study #?  [smiley=huh.gif]

Jim
Title: Re: Quality of Life Survey, Part One
Post by Mastifflvr28 on May 20th, 2004, 10:08am
oh gimme a break Rox...we ALL know how long yer on the phone for, on average, LMAO!!

Jean, can you please tell me which question that was?  I was trying really hard to make the questions that were work related, NOT mandatory, cause I know that not everyone worked.  Let me know which question that was so I can put either Not mandatory or an "other" :)

Kip, did you ever get it to work?  Sorry if it gave you difficulties.

Hey...*I* gotta fill this thing out!  :)
Mast
Title: Re: Quality of Life Survey, Part One
Post by notseinfeld on May 20th, 2004, 11:40am
Number 57, done.
Hey, I thought we were psuedonyms, not numbers aroud here....
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 21st, 2004, 2:22am

on 05/20/04 at 11:40:09, notseinfeld wrote:
Number 57, done.
Hey, I thought we were psuedonyms, not numbers aroud here....


we needed numbers because some people have listed reports, etc. under several different names. Some people change pseudonyms over the years and also use different names in different groups. In case you ever discover that you really ARE "seinfeld" instead of "not" seinfeld.....you'll still be number 57  ;;D

PF
Title: Re: Quality of Life Survey, Part One
Post by pubgirl on May 22nd, 2004, 8:21pm
Bob

Did the survey, but I think I may have skewed the results on the costs front. Did you have to be from the USA to fill it in? Sorry if that is the case. Due to the NHS system and the fact that you couldn't leave that section blank, anyone in the UK and maybe also some other European countries that don't work on the insurance system will be putting nil or very low figures in some of the expense questions.
This will give you a weird result as there are costs, it's just that we don't pay them and often don't even know what they are.

Sorry again if I have messed up

Wendy
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 23rd, 2004, 12:59am

on 05/22/04 at 20:21:02, pubgirl wrote:
Did the survey, but I think I may have skewed the results on the costs front. Did you have to be from the USA to fill it in? Sorry if that is the case.
Wendy


No need to apologize for being from England Wendy. Actually I find the accent rather attractive for a woman.

You may choose either one of the following explanations:

1. The reason we asked for, and made mandatory, where you were from, was so we could sort all the data based on where you live and different costs/systems, etc. So, some of your data will be included with people from all over the world and other data will apply strictly to your part of the globe. You get to be part of the masses and also special.

2. In Part 1 of the survey, we are trying to weed out the Brits.
In Part 2 we will be weeding out all the perverts. So, many of the people here better get Part 1, filled out...now!!!

;;D
PF
Title: Re: Quality of Life Survey, Part One
Post by UN_SOLVED on May 23rd, 2004, 1:31am
Been there ... and filled it out.
As far as the money questions ... I just put
$ X00,000's

Imitrex injections used =  $ X,000,000

and thats NO JOKE

Unsolved
Title: Re: Quality of Life Survey, Part One
Post by Giovanni on May 23rd, 2004, 6:33am
Just Finished.

John
:)
Title: Re: Quality of Life Survey, Part One
Post by Redd715 on May 23rd, 2004, 9:40am
I did the survey as well, but because of my financial status, most of the drug cost information is going to be scewed due to the fact taht most of mine have been in sample form, and now are covered under the medication assistance program.  I think I forgot to list one or two other meds I was tried on (dopymax moment...) Just have been so many in such a short time I can't think of them all....lol.  But I never knew what my number was/is....lmao.
Title: Re: Quality of Life Survey, Part One
Post by BobG on May 23rd, 2004, 9:51am
Mine is done.

I'm at work. YooHoo, I love screwing the company and now 37 minutes closer to going home time.
Title: Re: Quality of Life Survey, Part One
Post by Ueli on May 23rd, 2004, 11:17pm
I found some difficulties and inconsistencies filling out the survey:

How many different doctors have you seen regarding headaches?
Does this count include the dead ends, like dentist and ENT doc?

Name the top 3 most important factors in choosing a doctor.
I was refered to a neuro who helped, I never had to waste a thought on desirable qualities of another doctor.

If no, would insurance change the type or frequency of treatments?
(Dropdown list with only yes/no)
A somewhat idle question for people who are obliged by law top pay for an insurance...

Within how many years of the onset of your headaches, did you require eyesight correction?
Here I could not enter the correct number, -40. (there exist negative numbers too, I thought)

How many days of work would you estimate you miss, per year, due to your headaches?
How many days of work would you estimate you miss, per year, due to your headaches?
How many days of work would you estimate you miss, per year, due to your headaches?
Have you lost your job or been denied a job or promotion due to your headaches?
Confusing questions for someone not part of the workforce, and all the zeros might bias the results.

Are the social activities of your children affected (lessened) due to your clusters?
(Dropdown list with only yes/no)
Counter-question: Have you stopped beating up spouse and children every Saturday night? (answer yes or no)

PFNADs
Ueli
Title: Re: Quality of Life Survey, Part One
Post by Pinkfloyd on May 25th, 2004, 1:36am

on 05/23/04 at 23:17:22, Ueli wrote:
How many different doctors have you seen regarding headaches?
Does this count include the dead ends, like dentist and ENT doc?
Ueli


Is there a difference between a dead end dentist and a dead end neurologist?
Sorry no punch line.
The answer is yes, count them.


on 05/23/04 at 23:17:22, Ueli wrote:
Name the top 3 most important factors in choosing a doctor.
I was refered to a neuro who helped, I never had to waste a thought on desirable qualities of another doctor.
Ueli


Then he/she probably met your top three factors, or knowing you, you'd have been out the door.
Let's see...
1. he helped
2. he didn't live in the US
3. he didn't try to sell me noni Juice
?


on 05/23/04 at 23:17:22, Ueli wrote:
If no, would insurance change the type or frequency of treatments?
(Dropdown list with only yes/no)
A somewhat idle question for people who are obliged by law top pay for an insurance...

Ueli


I thought I'd give you an easy one.


on 05/23/04 at 23:17:22, Ueli wrote:
Within how many years of the onset of your headaches, did you require eyesight correction?
Here I could not enter the correct number, -40. (there exist negative numbers too, I thought)
Ueli


We try very hard to stay positive here Ueli.
I'm sure you knew what we were getting at and since it seems you were blind at birth, a simple n/a would suffice. ;-)


on 05/23/04 at 23:17:22, Ueli wrote:
How many days of work would you estimate you miss, per year, due to your headaches?
How many days of work would you estimate you miss, per year, due to your headaches?
How many days of work would you estimate you miss, per year, due to your headaches?
Have you lost your job or been denied a job or promotion due to your headaches?
Confusing questions for someone not part of the workforce, and all the zeros might bias the results.

Ueli


Not as much as the people that are getting paid for not actually working. ;)


on 05/23/04 at 23:17:22, Ueli wrote:
Are the social activities of your children affected (lessened) due to your clusters?
(Dropdown list with only yes/no)
Counter-question: Have you stopped beating up spouse and children every Saturday night? (answer yes or no)

PFNADs
Ueli


Yes, I try to spread it out evenly over the week nowadays. I'm just too old to handle all that exercise in one night.

Ueli,
A large sample size will work out the extremes when the stats are run. Other points, such as the work questions are taken into account when the stats are drawn.
Thanks for completing the survey and adding to the sample size.

BobW
Title: Re: Quality of Life Survey, Part One
Post by maria9 on Jun 9th, 2004, 9:49am
I just completed the survey.  

Marsha  :D
Title: Re: Quality of Life Survey, Part One
Post by alleyoop49 on Jun 14th, 2004, 9:46pm
I did the best I could! [smiley=huh.gif]


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