Informed Consent

[Tman]

Good morning,

I hope all are well. I could use a little help if anyone would be willing to give me some information. I am conducting an in formal survey to prepare for a presentation for a subcommitte for Helath and Human Services. I am interested in responses from people who have recieved or about to recieve a heart valve transplant.

Here are my questions:

1. What type of information did you recieve about the procedure?

2. Risks involved in the procedure itself ?

3. Risks of infectious disease transmission?

4. who provided this information, nurse, resident, Cardiologist, Cardio-Thoracic Surgeon?

5. Do you feel that the information was readily available ?

6. What sources did you utilize to obtain this information ? (Brochures, websites, professionals)

I appreciate any and all help that you can provide.

Warm Regards,

Kel

Kelly Stutes

 

[Lynlw]

May I ask who you work for? what kind of company etc. I'm curious since you probably joined just to get this kind of info to share for some purpose, did you get permssion from the group owner Hank, or talk to him to see if it was ok

ps, Since you mentioned transplant, i was wonderring if you were just interested in people who got human donor valves or othe tissue valves, or all valves, (sorry about typing having finger problems)

 

[Greg a]

I agree with Lyn that you should be intouch with Hank and IF AND ONLY IF a member should want to respond it should be OFF the board. Just my two cents!

 

[Bina]

Add my 2 cents:
The questions being asked, by a total stranger, don't seem to be appropriate for a public forum such as this one.

 

[Julian]

Offer me money and I'll tell you anything you want to know. : )
LOL just kidding, talk to Hank or pay the toll to the troll.

 

[Tman]

May I ask who you work for? what kind of company etc. I'm curious since you probably joined just to get this kind of info to share for some purpose, did you get permssion from the group owner Hank, or talk to him to see if it was ok

ps, Since you mentioned transplant, i was wonderring if you were just interested in people who got human donor valves or othe tissue valves, or all valves, (sorry about typing having finger problems)

Good morning Lyn, et al.

I am currently retired from the UT School of Medicine in San Antonio. I remain active (Volunteer) with several entities that strive to improve the qaulity, efficacy, and safety of medical devices. I was looking for the information to see if a larger National study would be beneficial to the manufacturing side of the industry.

While with the University I was involved in thousands of transplants to include solid organs, tissues, and heart valves (Mechanical, porcine, bovine, and human allografts.)

I apologize if I have stepped on anyone's toes, it was unintentional.

I wish you all well.

Kel

 

[Lynlw]

Good morning Lyn, et al.

I am currently retired from the UT School of Medicine in San Antonio. I remain active (Volunteer) with several entities that strive to improve the qaulity, efficacy, and safety of medical devices. I was looking for the information to see if a larger National study would be beneficial to the manufacturing side of the industry.

While with the University I was involved in thousands of transplants to include solid organs, tissues, and heart valves (Mechanical, porcine, bovine, and human allografts.)

I apologize if I have stepped on anyone's toes, it was unintentional.

I wish you all well.

Kel

My thoughts, and I'm just a nobody, normal member, maybe your best bet would be IF you ask Hank and he is ok with it of course would be to make your survey somewhere (im not sure how im computer impaired, but i think they have places you can make surveys, if answerred them before) and then post the link if anyone would like to help they could click the link..IF you did it that way and wrote a description, maybe people would be willing to share the link with other heart groups etc

 

[Lily]

Hello Kel -

I guess I don't mind attempting a reply

I don't know if this is what you're after, and it may not be, but my experience (with a brief background) is that several years ago I recognized that I was becoming very ill and suspected it was from a congenitally deformed valve that was failing, but I had gotten bad advice from my cardiologist who told me that I was "fine."

Not wanting to be a hypochondriac, I tried to better inform myself about my health issue and I primarily searched the web for months and read studies, albeit with limited absorption. I eventually realized how bad that cardiologist's advice was and decided it couldn't hurt to get a second opinion. Around that time, after months of searching, I found vr.com (now vr.org) and found that reading expressions from lay persons on this site helped me to better wrap my mind around the whole thing, including possible issues. I recall how glad I was to find this site.

I believe that searching the web requires great caution, however, because some sites and studies (and comments) are motivated by opinions or agendas; things we read on the web may not even be badly-intended but they may not be accurate or applicable in each of our unique situations, and sometimes emotions must be factored in. And each patient's experience is unique and also limited.

The biggest hurdle for me was finding doctors whom I felt were experienced and caring. And eventually I found doctors, in whom I felt confidence, through research and word-of-mouth references. I relied on my doctors for the facts but it helped me tremendously to read what other people, in a similar situation, had actually experienced.

 

[DebbyA]

First, I think Lyn made some very good suggestions.

Second, I think a legitimate request would include a full name and contact information, as well as identifying the 'entities' you are associated with.

Third, when I want to be taken seriously, I check my spelling.

 

[Luana]

Spelling, punctuation and diction made me think this is hokey.

 

[Jkm7]

I wonder if she posted on other forums such as this one?

 

[Bina]

She/He/It could be writing a book.....

 

[Jkm7]

Why would we participate and provide all the information. Some might consider it rather private IMO

 

[Greg a]

SEEMS he is what he says

Kelly J Stutes's Salary
Title Faculty Associate
Agency The University of Texas Health Science Center at San Antonio
Department Transplant Center
Gender Male

Hire Date 04/15/1994
Salary $170,000
Current as of June 8, 2011

http://www.texastribune.org/library...th-science-center-at-s/kelly-j-stutes/845410/

 

[Bina]

Greg, you are good. But either way I am not doing anybody's school homework for them

 

[Greg a]

Kelly this is the "Hank" spoken of :

http://www.valvereplacement.org/forums/member.php?1-Hank

 

[kfay]

SEEMS he is what he says

Greg, why in the world you would put someone's salary on here? IMO, that is irrelevant to what is going on here and really just rude. This person came to ask questions of us, those of you who don't feel comfortable for whatever reason don't have to respond!

 

[Greg a]

Greg, why in the world you would put someone's salary on here? IMO, that is irrelevant to what is going on here and really just rude. This person came to ask questions of us, those of you who don't feel comfortable for whatever reason don't have to respond!

Reading the posts from the VERY START there was a question to the real motivation and reason for Mr Stute's post even to the sex of the poster. Sorry KAy, but I simply googled his name and that was the first result ....(all in the public domain already published)......I thought it would be wrong and just rude to EDIT what I found so I put it up as published in a newspaper as to do anything else would take it out of context and I AM NOT JUST RUDE

 

[chaconne]

Kelly,

It seems you may have started a slightly controversy. Let me just point out that as a registered user, you have access to previous posts and searches for information. You might just want to spend some time going through a lot of it and see if it's already been posted in threads (which is very likely!).

I believe the strength of this forum lies in the personal encouragement we all receive from talking to each other and relating experiences. We tend to be like a close-knit family and shy away from such "formal" requests. I think your best bet, other than what I said above, would be to post a link to an external survey, and those of us who want to will fill it out for you.

 

[normofthenorth]

I agree with chaconne. We share information among ourselves as if we were talking in private, "entre nous". But this whole forum is wide open to anybody on the Internet, so our secrets aren't secret at all. That openness probably does a lot of good -- by letting researchers and "lurkers" get answers to their questions, even if they're too shy to post and ask -- but it also means that our posts are more public than we may realize.

My questions about the issue here are:

• Is informed consent important?
• Is it possible that some of us didn't get enough info in advance, or that we'd benefit from more?
• If "yes" to those, is it possible that a professional expert doing a study or otherwise getting involved could help (more than we could probably help by ourselves)?

I have no trouble deciding to answer "yes" to all of the above. That's not to minimize the concerns about turning this forum to a use that Hank may not approve of, or insisting that nobody participate who isn't doing so voluntarily (not that that's even possible, IMHO!)

Finally, having recently come through an Achilles Tendon rupture AND my AVR (and hanging out here AND on AchillesBlog.com), I'd MUCH rather see this approach applied to AT ruptures, because I think the rate of abuse of informed consent among those patients (esp. in the US) is outrageously high, and WAY higher than for us HVR patients. Among the abuses (IMHO) are a huge overuse of surgery, and a huge overuse of slow "conservative" rehab protocols, and of casts rather than orthotic boots. FWIW, my $0.02, obviously. [End of sidebar rant!]