Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jan 28;11(3):698.
doi: 10.3390/jcm11030698.

Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study

Emerentia Q W Spoon  1 , Kirsten Kortram  1 , Sohal Y Ismail  2 , Daan Nieboer  3 , Frank C H d'Ancona  4 , Maarten H L Christiaans  5 , Ruth E Dam  6 , Hendrik Sijbrand Hofker  7 , Arjan W J Hoksbergen  8 , Karlijn Ami van der Pant  9   10 , Raechel J Toorop  11 , Jacqueline van de Wetering  12 , Jan N M Ijzermans  1 , Frank J M F Dor  1   13 , On Behalf Of The Dutch Working Group Informed Consent For Live Donor Nephrectomy Prince
Affiliations

Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study

Emerentia Q W Spoon et al. J Clin Med. .

Abstract

Background: Informed consent for living kidney donation is paramount, as donors are healthy individuals undergoing surgery for the benefit of others. The informed consent process for living kidney donors is heterogenous, and the question concerns how well they are actually informed. Knowledge assessments, before and after donor education, can form the basis for a standardized informed consent procedure for live kidney donation.

Methods: In this prospective, a multicenter national cohort study conducted in all eight kidney transplant centers in The Netherlands, we assessed the current status of the informed consent practice for live donor nephrectomy. All of the potential living kidney donors in the participating centers were invited to participate. They completed a pop quiz during their first outpatient appointment (Cohort A). Living kidney donors completed the same pop quiz upon admission for donor nephrectomy (Cohort B).

Results: In total, 656 pop quizzes were completed (417 in Cohort A, and 239 in Cohort B). The average donor knowledge score was 7.0/25.0 (±3.9, range 0-18) in Cohort A, and 10.5/25.0 (±2.8, range 0-17.5) in Cohort B. Cohort B scored significantly higher on overall knowledge, preparedness, and the individual item scores (p < 0.0001), except for the long-term complications (p = 0.91).

Conclusions: Donor knowledge generally improves during the live donor workup, but it is still quite disappointing. Long-term complications, especially, deserve more attention during living kidney donor education.

Keywords: education; health literacy; informed consent; kidney donation; live donor nephrectomy; living donation; long-term risk; transplantation.

PubMed Disclaimer

Conflict of interest statement

F.J.M.F.D. has received consultancy fees and speaker fees from Astellas, Sandoz, Chiesi, Baxter, and TEVA. The other authors of this manuscript have no potential conflicts of interest to disclose. All authors confirm that they have read and complied with the policies on competing interests and the license to publication. The corresponding authors attest that all the listed authors meet the authorship criteria, and that no others meeting the criteria have been omitted.

References

    1. Boss E.F., Mehta N., Nagarajan N., Links A., Benke J.R., Berger Z., Espinel A., Meier J., Lipstein E.A. Shared Decision Making and Choice for Elective Surgical Care: A Systematic Review. Otolaryngol. Head Neck Surg. 2016;154:405–420. doi: 10.1177/0194599815620558. - DOI - PMC - PubMed
    1. Delmonico F.L. Consensus statement on the live organ donor. J. Am. Med. Assoc. 2000;284:2919–2926. - PubMed
    1. Kortram K., Lafranca J.A., Ijzermans J.N., Dor F.J. The need for a standardized informed consent procedure in live donor nephrectomy: A systematic review. Transplantation. 2014;98:1134–1143. doi: 10.1097/TP.0000000000000518. - DOI - PubMed
    1. Kortram K., Ijzermans J.N., Dor F.J. Towards a standardized informed consent procedure for live donor nephrectomy: What do surgeons TELL their donors? Int. J. Surg. 2016;32:83–88. doi: 10.1016/j.ijsu.2016.05.063. - DOI - PubMed
    1. Petrini C. Ethical issues with informed consent from potential living kidney donors. Transplant. Proc. 2010;42:1040–1042. doi: 10.1016/j.transproceed.2010.03.075. - DOI - PubMed

LinkOut - more resources