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

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

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


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.

Original languageEnglish
Article number698
Number of pages15
JournalJournal of Clinical Medicine
Issue number3
Publication statusPublished - 28 Jan 2022


  • education
  • health literacy
  • informed consent
  • kidney donation
  • live donor nephrectomy
  • living donation
  • long-term risk
  • transplantation


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