Living Kidney Donor Survey: Transplant Center Follow-up Care

[ars0168]

Hello, fellow donors!

We invite you to take a moment to participate in this survey. It was created out of a very real need for accurate data on the follow-up contact and care that does (and often does not) happen post-donation. The living kidney donor community has learned that UNOS (United Network for Organ Sharing) is trying to pass protocol ( http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/proposals.asp  -  #9 ) that would make it mandatory for transplant centers to follow-up with their donors. However, once pressed for records of follow-up attempts, many centers have responded with the claim that donors do not wish to be contacted after their surgery for follow-up questioning and care. In an effort to present sound proof and representative data to the transplant community to back up our sentiments that donors do typically want some form of follow up, we decided to reach out to the donor community via this questionnaire. Your participation gives voice to this very important cause, and we thank you for speaking up on behalf of those donors who cannot do so themselves.

On behalf of the living kidney donor community at large, thank you for agreeing to take part in this brief survey.

To participate in the survey, please click on this link:
https://www.surveymonkey.com/s/follow-up_care


Thank you!
Angela Stimpson

http://oksolo.blogspot.com/
Non-directed kidney donor:  09.22.10

[sherri]

Thank you for taking the initiative. I am now 4 years post donation and have to once again find a new family physician, as she has decided to switch her practice to a fee for service/concierge practice. If nothing else, it would be comforting to know that the hospital where I donated actually takes an interest in their donors. I have to use my insurance when I see my physician. I would have no qualms about using it at Johns Hopkins, where I donated. Hope we can all change policy and improve practice in living organ donations.

Sherri

[Donna Luebke]

Angela

I completed the survey.  I was seen only once at the transplant center following my donation.  I support a model of data submission which allows donors and their own care providers to submit data.  I have no interest in returning to the transplant center but would if this was the only route to at least get my data submitted within the 24 months as mandated ( just to clarify, I donated in 1994, there was no mandate.) Surgeons claim donors do not want to be followed in order to justify why so many of them mark us 'lost to followup' when they don't even try to find their donors.   

This data submission requirement is already mandatory--has been since 1999 under the OPTN Final Rule.  As donors, we are part of the OPTN data submission policy which includes all types of data including data about 'donors of organs'.  The previous policy was for 12 months followuop but then was extended to 24 months (around 2007).  When I was serving on the Board of OPTN/UNOS, a letter was sent to OPTN members by Joyce Somsak from HRSA reminding them of the mandatory data submission policy.  This was over 5 years ago.  A recent article noted that surgeons only want to do followup for 3 months.  As surgeons, their only concern is for the 90 day global period yet we all know of donors who have had issues for much longer.  For an honest and thorough consent process, potential donors should know not just about surgical risks but medical, financial and psychosocial since we are live donors. 

Let us know your results.  The call for accurate and honest short and long-term data is long overdue.  We are at the point where the credibility of every surgeon and transplant center is at risk when they do not followup on their donors.  Means they do not care.  And without data, there is no proof of quality. 

[Scott337]

Thanks for presenting this Angela;

I, like many others, received little or no post-op/release information regarding after-care, what issues to watch for, what limits our creatine levels should fall in, etc...I had one follow-up appointment at 6 weeks and they told me to go to my personal physician after that.  I am very happy with the care and personal attention I received through the University of Minnesota and they always answer any questions I have when I call, but I didn't feel they were interested in taking initiative in follow-up with me past the 6 week mark.  They did tell me to feel free to contact them with any questions I had and if need arises for some sort of follow-up, it may be done at the U of M with no cost to me.   

I completed the survey - I hope policy is created to reflect the needs of donors post-op and long-term.

Regards!

Scott   

[donor99]

One friendly ammendment to the questionaire. It would be interesting to see if past donors have experienced health issues not related to the donation, like heart disease, diabetes etc. We are using more older, obese and complex donors. Would be interesting to see what happens to them years later.

[Michael]

Angela, what are your plans for the survey results?

[john78259]

Follow up protocol at the Texas Transplant Institute (San Antonio) is set at 2 weeks, 6 months, 1 year and 2 years for lab work and check up. The surgeon even asked me to stop by 3 months after the surgery to follow up. The first week after surgery, they even called me at home to see how I was doing and offer support. I love the folks at TTI!

[jmaurer]

Thank you for posting this.  I have become increasingly frustrated about the complete lack of follow-up from my transplant center.  If I didn't make ten phone calls, they wouldn't have even seen me for my one year check up.  They have not seen me since or expressed any interest in my health.  I feel like they should follow-up for at least two years to make sure you are not having any issues.  I know that many people on this board have higher than usual creatinine levels (mine is 1.05) and concerns about eGFR with no experts to ask for help, unless we want to use our insurance to see a specialist.  It kind of makes you feel used  Very frustrating!

[ars0168]

Hi Michael,

I'm one of a group of several living kidney donors that have gotten together to work towards making the donor experience a better one. We hope to work together, as a group, to serve as mentors and advocate for donors through the process. By creating surveys, we hope to collect a sampling of information and experiences we can use to help us, help others.

[mom2three]

Thanks for the opportunity to complete the survey. Cleveland Clinic now does an excellent job with its Donor WIn program (Donor Wellness INitiative), providing extensive follow-up free of cost to the donor.  There is an article about it in the Sep-Oct 2011 UNOS Update publication.

[Michael]

Any results from the survey to share?

[jojo1490]

I hope this survey will really help in the care of the living kidney donor community. Thank you Angela for your great effort.