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

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 assess...

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Main Authors: 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”)
Format: Article
Language:English
Published: MDPI AG 2022-01-01
Series:Journal of Clinical Medicine
Subjects:
Online Access:https://www.mdpi.com/2077-0383/11/3/698
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author 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”)
author_facet 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”)
author_sort Emerentia Q. W. Spoon
collection DOAJ
description 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 (<i>p</i> < 0.0001), except for the long-term complications (<i>p</i> = 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.
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spelling doaj.art-4e63cc87ce7846239034dbf7bdebd30d2023-11-23T16:52:35ZengMDPI AGJournal of Clinical Medicine2077-03832022-01-0111369810.3390/jcm11030698Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE StudyEmerentia Q. W. Spoon0Kirsten Kortram1Sohal Y. Ismail2Daan Nieboer3Frank C. H. d’Ancona4Maarten H. L. Christiaans5Ruth E. Dam6Hendrik Sijbrand Hofker7Arjan W. J. Hoksbergen8Karlijn Ami van der Pant9Raechel J. Toorop10Jacqueline van de Wetering11Jan N. M. Ijzermans12Frank J. M. F. Dor13on behalf of the Dutch Working Group Informed Consent for Live Donor Nephrectomy (“PRINCE”)Erasmus MC University Medical Centre, Department of Surgery, 3015 GD Rotterdam, The NetherlandsErasmus MC University Medical Centre, Department of Surgery, 3015 GD Rotterdam, The NetherlandsErasmus MC University Medical Centre, Department of Psychiatry, 3015 GD Rotterdam, The NetherlandsErasmus MC University Medical Centre, Department of Public Health, 3015 GD Rotterdam, The NetherlandsRadboud University Medical Centre, Department of Urology, 6525 GA Nijmegen, The NetherlandsMaastricht University Medical Centre, Department of Internal Medicine, 6229 HX Maastricht, The NetherlandsLeiden University Medical Centre, Department of Nephrology, 2333 ZA Leiden, The NetherlandsUniversity Medical Centre Groningen, Department of Surgery, 9713 GZ Groningen, The NetherlandsVU Medical Centre, Department of Surgery, 1081 HV Amsterdam, The NetherlandsAmsterdam University Medical Centre, Renal Transplant Unit, Department of Internal Medicine, 1105 AZ Amsterdam, The NetherlandsUtrecht University Medical Centre, Department of Surgery, 3584 CX Utrecht, The NetherlandsErasmus MC University Medical Centre, Department of Nephrology, 3015 GD Rotterdam, The NetherlandsErasmus MC University Medical Centre, Department of Surgery, 3015 GD Rotterdam, The NetherlandsErasmus MC University Medical Centre, Department of Surgery, 3015 GD Rotterdam, The NetherlandsBackground: 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 (<i>p</i> < 0.0001), except for the long-term complications (<i>p</i> = 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.https://www.mdpi.com/2077-0383/11/3/698educationkidney donationtransplantationinformed consentliving donationhealth literacy
spellingShingle 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”)
Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study
Journal of Clinical Medicine
education
kidney donation
transplantation
informed consent
living donation
health literacy
title Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study
title_full Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study
title_fullStr Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study
title_full_unstemmed Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study
title_short Living Kidney Donor Knowledge of Provided Information and Informed Consent: The PRINCE Study
title_sort living kidney donor knowledge of provided information and informed consent the prince study
topic education
kidney donation
transplantation
informed consent
living donation
health literacy
url https://www.mdpi.com/2077-0383/11/3/698
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