Long-term risks after kidney donation: how do we inform potential donors? A survey from DESCARTES and EKITA transplantation working groups

Abstract

Background Publications from the last decade have increased knowledge regarding long-term risks after kidney donation. We wanted to perform a survey to assess how transplant professionals in Europe inform potential kidney donors regarding long-term risks. The objectives of the survey were to determine how they inform donors, to what extent, and to evaluate the degree of variation. Methods All transplant professionals involved in the evaluation process were considered eligible, regardless of the type of profession. The survey was dispatched as a link to a web-based survey. The subjects included questions on demographics, the information policy of the respondent and the use of risk calculators, including the difference of relative and absolute risks, and how the respondents themselves understood these risks. Results The main finding was a large variation in how often different long-term risks were discussed with the potential donors, i.e. from always to never. Eighty percent of respondents stated that they always discuss the risk of end stage renal disease, while fifty-six percent of respondents stated that they always discuss the risk of preeclampsia. Twenty percent of respondents answered correctly regarding the relationship between absolute and relative risks for rare outcomes. Conclusions The use of written information and checklists should be encouraged. This may improve standardization regarding the information provided to potential living kidney donors in Europe. There is a need for information and education among European transplant professionals regarding long-term risks after kidney donation and how to interpret and present these risks.

Pregnancy after living kidney donation, a systematic review of the available evidence, and a review of the current guidance

“…Fifty‐six percent of respondents always discussed pre‐eclampsia, 12% often did, 12% rarely did and 6% never discussed it. Only 20% of respondents were able to accurately answer questions on absolute versus relative risk for rare outcomes 60 . While this survey may be subject to the inherent biases of self‐reports, it suggests there is a need to improve and standardize the communication of risk to potential LKDs.…”

“…Only 20% of respondents were able to accurately answer questions on absolute versus relative risk for rare outcomes. 60 While this survey may be subject to the inherent biases of self‐reports, it suggests there is a need to improve and standardize the communication of risk to potential LKDs. Box 1 lists our guidance on this topic, Box 2 lists our recommendations for future studies, and Box 3 , provides a guide for practitioners counseling potential LKDs.…”

Risk for subsequent hypertension and cardiovascular disease after living kidney donation: is it clinically relevant?

“…As this review highlights, the evidence required is still sadly lacking. It is therefore perhaps not surprising that there is a large variation in how often (from always to never) different long-term risks are discussed with potential donors [ 144 ].…”

Post nephrectomy renal function: Donor nephrectomy vs. radical nephrectomy

“…The most of the world's leading kidney transplant centers focus their attention on donor/recipient selection, the transplantation process itself, post-operative follow-up of renal transplant patients and long-term outcomes in recipients [1][2][3][4][5] The situation is similar in Serbia 6 . However, in recent years, special attention has been paid to living kidney donors, due to long-term follow-up of these patients after nephrectomy and due to the fact that, when compared with the general population, they have an increased occurrence rate of some diseases, such as ischemic heart disease 7,8 .…”

“…From the medical point of view, it is of the utmost importance that we have not consciously, permanently caused impaired health of the donor, primum non nocere. Donor nephrectomy inevitably initially leads to a decrease in renal function, manifested by increased proteinuria and blood pressure 8,9 .…”