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

Emerentia Q W Spoon,Daan Nieboer,Sohal Y Ismail,Frank J M F Dor,Jacqueline Van De Wetering,Hendrik Sijbrand Hofker,Ruth E Dam,Jan N M Ijzermans,Karlijn Ami Van Der Pant,Kirsten Kortram,Raechel J Toorop, ,Maarten H L Christiaans,Arjan W J Hoksbergen,Frank C H D’Ancona

doi:10.3390/jcm11030698

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.

Highlights

Informed consent is a cornerstone of medical practice, and it is required for surgical interventions [1]
The local situation in the eight participating centers varies with regard to the donor nephrectomy itself, and with regard to the specific setup of the informed consent procedure for live kidney donation
On the basis of the feedback on the question regarding the surgical technique in our pilot study (Kortram, unpublished), we rephrased the question for the PRINCE study; only two donors stated that the technique had been explained to them, but they did not elaborate on what this explanation entailed

Summary

Introduction

Informed consent is a cornerstone of medical practice, and it is required for surgical interventions [1]. Living donors are (generally) healthy individuals, from whom organs are removed for the benefit of others This warrants an especially vigilant approach to the informed consent process for live donor nephrectomy. Informed consent for living kidney donation is paramount, as donors are healthy individuals undergoing surgery for the benefit of others. 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). 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

Methods

Results

Conclusion