I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: GoingThere on January 07, 2013, 07:11:52 AM

Title: Worldwide research project - please participate in our survey
Post by: GoingThere on January 07, 2013, 07:11:52 AM
Dear Sir/Madam,

dialysis patients can have issues when having AV fistula as AV fistula can include scar tissue and the appearance of “bulging veins” at the access site. This can affect persons’ self-esteem which is related to body image for several reasons: people care about how others view them; people want to fit in and not stand out or appear different; people feel judged and evaluated according to looks. These are the reasons why Slovenian Kidney’s disease society  research group conduct a survey among HD patients around the world to see how they cope with AV fistula.


You are kindly invited to participate in this pioneer project. Filling out the anonymous questionnaire at the following link https://www.1ka.si/a/14221 will take only 7 minutes of your time. All the gathered data will be used strictly for scientific purposes. The results of the study will be published on this website.

The questionnaire will be available till the end of March.

Thank you for your time and cooporation!

We would also like to thank to the admins for allowing us to post this survey.

Yours sincerely,

Slovenian Kidney’s disease society research team
Title: Re: Worldwide research project - please participate in our survey
Post by: CebuShan on January 07, 2013, 08:02:12 AM
I answered it. Interesting survey.
Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on January 10, 2013, 01:41:26 PM
C mon guys, we can do better than that. Your voice is a voice of change.
Title: Re: Worldwide research project - please participate in our survey
Post by: MaryD on January 10, 2013, 03:56:29 PM
I've already done it.
Title: Re: Worldwide research project - please participate in our survey
Post by: kit78 on January 13, 2013, 10:42:45 AM
I did it.
Title: Re: Worldwide research project - please participate in our survey
Post by: kitkatz on January 13, 2013, 08:40:57 PM
Done.
Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on January 18, 2013, 05:46:28 AM
Till now we have received 22 answers. I must write something that this post will be on top again  :shy;
Title: Re: Worldwide research project - please participate in our survey
Post by: Rivy on January 18, 2013, 08:53:09 AM
 :thumbup; Thank you for doing this..This has been on my mind about my AV fistula and the appearance of it that makes me feel less self-esteem then I should...No one understands how you feel that don't get it..Thank you for doing such a great job! 
Rivy :cuddle;

Dear Sir/Madam,

dialysis patients can have issues when having AV fistula as AV fistula can include scar tissue and the appearance of “bulging veins” at the access site. This can affect persons’ self-esteem which is related to body image for several reasons: people care about how others view them; people want to fit in and not stand out or appear different; people feel judged and evaluated according to looks. These are the reasons why Slovenian Kidney’s disease society  research group conduct a survey among HD patients around the world to see how they cope with AV fistula.


You are kindly invited to participate in this pioneer project. Filling out the anonymous questionnaire at the following link https://www.1ka.si/a/14221 will take only 7 minutes of your time. All the gathered data will be used strictly for scientific purposes. The results of the study will be published on this website.

The questionnaire will be available till the end of March.

Thank you for your time and cooporation!

We would also like to thank to the admins for allowing us to post this survey.

Yours sincerely,

Slovenian Kidney’s disease society research team
Title: Re: Worldwide research project - please participate in our survey
Post by: gothiclovemonkey on January 18, 2013, 08:01:21 PM
done
Title: Re: Worldwide research project - please participate in our survey
Post by: boswife on January 18, 2013, 08:56:41 PM
i did it  too :)  I asked bo for answers but i did it for him a few days ago though so would be included in your first count... hope you get a bunch more  :2thumbsup;... 
Title: Re: Worldwide research project - please participate in our survey
Post by: Lexxtech18 on January 19, 2013, 04:58:44 AM
Done! Interesting survey, I'm very curious to see the results.  :2thumbsup;
Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on January 31, 2013, 01:41:46 AM
I must write something to bring this post on top.
I already conducted survey among slovenian HD patients and results will be presented with poster at Spring Clinical meeting in Orlando, Florida from April 2-6. Although I'm the 
first author I won't be there as crowded places present danger to me due to ATG in high doseage of drugs. But three of my colleagues will be there.


GT
Title: Re: Worldwide research project - please participate in our survey
Post by: SugarBear on January 31, 2013, 01:29:59 PM
Thanks for bumping as I might have miss this post.  I did the survey and was wondering have you thought of posting this link on Facebook?  There are several dialysis groups on there.  You may significantly increase your respondent numbers.
Title: Re: Worldwide research project - please participate in our survey
Post by: del on January 31, 2013, 02:51:32 PM
Done!!
Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on February 01, 2013, 02:08:57 AM
Thanks for bumping as I might have miss this post.  I did the survey and was wondering have you thought of posting this link on Facebook?  There are several dialysis groups on there.  You may significantly increase your respondent numbers.

Tnx for the idea. I will do that. Which groups did you have in mind?

GT
Title: Re: Worldwide research project - please participate in our survey
Post by: chook on February 01, 2013, 04:58:19 AM
Done!!
Title: Re: Worldwide research project - please participate in our survey
Post by: Alex C. on February 01, 2013, 07:53:12 AM
FWIW, when my mother started dialysis almost 30 years ago, they gave her a vein graft on her left forearm rather than a fistula, and THAT was very, very ugly. From that day forward, she never again wore short sleeves. She even made her own clothing, and designed several tops with roomy lower sleeves, so that she  could cover the access during dialysis and not feel cold.
Title: Re: Worldwide research project - please participate in our survey
Post by: Desert Dancer on February 01, 2013, 11:01:23 AM
Done.
Title: Re: Worldwide research project - please participate in our survey
Post by: SugarBear on February 01, 2013, 03:41:59 PM
Thanks for bumping as I might have miss this post.  I did the survey and was wondering have you thought of posting this link on Facebook?  There are several dialysis groups on there.  You may significantly increase your respondent numbers.

Tnx for the idea. I will do that. Which groups did you have in mind?

GT

These are the ones I usually follow, not sure if you can post without joining the groups.

https://www.facebook.com/groups/2229039880/

https://www.facebook.com/groups/25199689389/

https://www.facebook.com/groups/DialysisUncensored/

https://www.facebook.com/groups/44692413281/

https://www.facebook.com/groups/kidneyclub/

Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on February 06, 2013, 01:23:32 AM
Did you know that approximately 1/3 of HD patients would like to have a cosmetic surgery of their AV fistula due to "bumps".
Title: Re: Worldwide research project - please participate in our survey
Post by: Leanne on February 06, 2013, 08:23:49 AM
Done...during dialysis no less.
Title: Re: Worldwide research project - please participate in our survey
Post by: natnnnat on February 09, 2013, 04:23:50 AM
Done.  I found it quite an interesting survey too.
Title: Re: Worldwide research project - please participate in our survey
Post by: geoffcamp on February 09, 2013, 05:13:26 AM
Done. Great questionnaire what/when/where can I see results?  THX. G.
Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on February 09, 2013, 06:30:40 AM
I will do quick analysis after I'm done gathering data. But I'm focused on SCI Journals.
Slovenian results will be presented at Spring clinical meetings in Orlando. I will also post poster here on IHD.

GT
Title: Re: Worldwide research project - please participate in our survey
Post by: geoffcamp on February 09, 2013, 12:59:00 PM
I will do quick analysis after I'm done gathering data. But I'm focused on SCI Journals.
Slovenian results will be presented at Spring clinical meetings in Orlando. I will also post poster here on IHD.

GT

Cool I actually live about 2 hours from Orlando. Can't wait to see the results. G.
Title: Re: Worldwide research project - please participate in our survey
Post by: Bajanne on February 09, 2013, 03:30:48 PM
At first I was not going to do the survey since I thought it was only about fistulas.  I checked it out and there was a place for us graft people.  Interesting survey.
Title: Re: Worldwide research project - please participate in our survey
Post by: GoingThere on March 11, 2013, 05:56:36 AM
Guys, this is my 100 post. Yeaaaaah.
Please, please participate in my survey. I want to change things. Here in Slovenia I've made quite some progress. First patient did already have a cosmetic surgery and now she can proudly wear short sleeves.
So please, let us set goal at least 100 responses.

GT