Living Donor Survey #2 - Transplant Centers & Care

[ars0168]

Hello fellow kidney donors!

I hope everyone is enjoying their summer and this email finds you all in great health!

We have yet another survey that we are hoping you all will participate in. This one will take approximately 10 minutes to complete, at the most.

The purpose of this particular survery is to find out what improvements could be made in the living donor community, specifically with the pre and post-op care from the transplant center in which you donated. Your answers will be treated in confidence and will help to plan discussions with transplant programs, legislators, HRSA and insurance carriers. 

PLEASE take a moment to forward this email to any living kidney donor that you might know. This survey can be directed to both directed, and non-directed donors. Our goal is to collect a total of 300 completed surveys. We encourage you to share this link on your blogs, social media sites, or emails.

We thank you for your time and consideration and we look forward to hearing from you!
If anyone has questions or comments, please contact me directly and I will do my best to get back to you within 24 hours.

Please click on the following link to direct you to the survey: https://www.surveymonkey.com/s/9WVJLSY

Smiles,
Angela Stimpson
ars0168@yahoo.com

Non-directed kidney donor 09.22.11
http://oksolo.blogspot.com/

[Clark]

Please restate question #4 as "non-directed" vs. "directed."  All donors are altruistic.

[ars0168]

Clark,

My apologies, we in no way intend to imply otherwise. Yes, we certainly agree with your comment. For the purpose of this survey though, we want to gather statistics in such a way as to identify those that have a designated recipient, and those that do not. As per your request, I di go in to make the revision on this. Unfortunately the software for this survey does not allow us to make modifications to this without deleting the entire analytics that we have received thus far.

I sincerely apologize if this has in any way slighted a donor, because I like you completely agree that all of us donors are altruistic.

Kind regards,
Angela

[PhilHoover]

I took the survery...thought it was good....

[ars0168]

Thank you, Phil. Your time is much appreciated!

Smiles,
Angela

[jmaese]

How about listing the hospital where the surgery or donation took place, to help possible donors if they are having their procedure done there?

[Orchidlady]

I was also rather surprised that a question wasn't asked about where the surgery was performed. I am guessing, Angela, that your use of answers are not being analyzed or tied to any given center (?). It was a very well thought out and easy survey. Liked the freeform at the end for any additional comments.

[ars0168]

Orchidlady,

Yes, that is precisely the reason why. It's not our intent to 'call out' and finger point to any specific center. We just want to gather some general information about living donors' experiences. We feel that something as precious as this journey always has room for improvement.

Thank you again for your participation and your comment.
We appreciate the kind words and the suggestions, and constructive criticism from everyone.

Smiles,
Angela

[livingdonor101]

Could you provide some information about the people or organization behind this survey and specifically what the results will be used for?

[ars0168]

Livingdonor101,

We're nothing more than a group of living donors that have decided to put our heads together and attempt to collect some information on the experiences of others. We don't have a title and our purpose is to see if we might compile a common thread of issues that some donors have experienced that they might feel has room for improvement. Actually, our motivation is pretty similar to that of which is your focus on your blog

Thank you for your comment.

Smiles,
Angela

[livingdonor101]

Obviously, everyone can make their own call on this, but I don't feel comfortable providing any information to 'a group of living donors' (unidentified) who have such vague goals. "discussions with transplant programs, legislators, HRSA and insurance carriers" - who and how? Those things take influence, money and organization. How is anyone to know that the results of the survey won't be used to increase living donation rather than providing protections and care for living donors? 

Clearly, some person or organization is funding the survey because surveymonkey isn't free. So while you might not have a name, you certainly have some sort of agenda and I'm not sure what it is. The people you're asking to contribute deserve to know exactly who and what is behind this.

There are a lot of people far more trusting than I am, but I would suggest some education regarding the use of human subjects in research projects, informed consent and the like. I've participated in academic surveys, questionaires and other projects, and your explaination/description would never pass muster with an IRB (independent review board).  If you're really interested in 'common threads', I suggest contacting the folks at Case Western Reserve University's bioethics department, specifically Mark Aulisio and Nichole Denman, who have conducted very indepth interviews with a number of living donors, and have been presenting their findings at conferences all over the world. You might also try searching for and reading doctoral dissertations that have already been completed: http://www.proquest.com/en-US/catalogs/databases/detail/pqdt.shtml