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; null On Behalf Of The Dutch Working Group Informed Consent For Live Donor Nephrectomy Prince

doi:10.3390/jcm11030698

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 journal › Article › Academic › peer-review

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.

Original language	English
Article number	698
Number of pages	15
Journal	Journal of Clinical Medicine
Volume	11
Issue number	3
DOIs	https://doi.org/10.3390/jcm11030698
Publication status	Published - 28 Jan 2022

Keywords

COMPLICATIONS
DECISION
DISEASE
DONATION
ETHICAL-ISSUES
HYPERTENSION
LIVER-DONORS
NEPHRECTOMY
RISKS
TRANSPLANTATION
education
health literacy
informed consent
kidney donation
live donor nephrectomy
living donation
long-term risk
transplantation

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10.3390/jcm11030698Licence: CC BY

Cite this

Spoon, E. Q. W., Kortram, K., Ismail, S. Y., Nieboer, D., d'Ancona, F. C. H., Christiaans, M. H. L., Dam, R. E., Hofker, H. S., Hoksbergen, A. W. J., van der Pant, K. A., Toorop, R. J., van de Wetering, J., Ijzermans, J. N. M., Dor, F. J. M. F., & On Behalf Of The Dutch Working Group Informed Consent For Live Donor Nephrectomy Prince (2022). Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study. Journal of Clinical Medicine, 11(3), Article 698. https://doi.org/10.3390/jcm11030698

@article{6b13d4630d73409cab9faec2a8caa92c,

title = "Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study",

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 = "COMPLICATIONS, DECISION, DISEASE, DONATION, ETHICAL-ISSUES, HYPERTENSION, LIVER-DONORS, NEPHRECTOMY, RISKS, TRANSPLANTATION, education, health literacy, informed consent, kidney donation, live donor nephrectomy, living donation, long-term risk, transplantation",

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

year = "2022",

month = jan,

day = "28",

doi = "10.3390/jcm11030698",

language = "English",

volume = "11",

journal = "Journal of Clinical Medicine",

issn = "2077-0383",

publisher = "Multidisciplinary Digital Publishing Institute (MDPI)",

number = "3",

}

Spoon, EQW, Kortram, K, Ismail, SY, Nieboer, D, d'Ancona, FCH, Christiaans, MHL, Dam, RE, Hofker, HS, Hoksbergen, AWJ, van der Pant, KA, Toorop, RJ, van de Wetering, J, Ijzermans, JNM, Dor, FJMF & On Behalf Of The Dutch Working Group Informed Consent For Live Donor Nephrectomy Prince 2022, 'Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study', Journal of Clinical Medicine, vol. 11, no. 3, 698. https://doi.org/10.3390/jcm11030698

TY - JOUR

T1 - Living Kidney Donor Knowledge of Provided Information and Informed Consent

T2 - The PRINCE Study

AU - Spoon, Emerentia Q W

AU - Kortram, Kirsten

AU - Ismail, Sohal Y

AU - Nieboer, Daan

AU - d'Ancona, Frank C H

AU - Christiaans, Maarten H L

AU - Dam, Ruth E

AU - Hofker, Hendrik Sijbrand

AU - Hoksbergen, Arjan W J

AU - van der Pant, Karlijn Ami

AU - Toorop, Raechel J

AU - van de Wetering, Jacqueline

AU - Ijzermans, Jan N M

AU - Dor, Frank J M F

AU - On Behalf Of The Dutch Working Group Informed Consent For Live Donor Nephrectomy Prince, null

PY - 2022/1/28

Y1 - 2022/1/28

N2 - 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.

AB - 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.

KW - COMPLICATIONS

KW - DECISION

KW - DISEASE

KW - DONATION

KW - ETHICAL-ISSUES

KW - HYPERTENSION

KW - LIVER-DONORS

KW - NEPHRECTOMY

KW - RISKS

KW - TRANSPLANTATION

KW - education

KW - health literacy

KW - informed consent

KW - kidney donation

KW - live donor nephrectomy

KW - living donation

KW - long-term risk

KW - transplantation

U2 - 10.3390/jcm11030698

DO - 10.3390/jcm11030698

M3 - Article

C2 - 35160147

SN - 2077-0383

VL - 11

JO - Journal of Clinical Medicine

JF - Journal of Clinical Medicine

IS - 3

M1 - 698

ER -