Living Kidney Donors' Information Needs and Preferences.

Area of Science:

• Nephrology
• Transplant Surgery
• Public Health

Background:

• Existing research indicates that information provided to potential living kidney donors is often inadequate.
• This study addresses the need to evaluate donor experiences with transplant center communications.

Purpose of the Study:

• To assess living kidney donors' perceptions of information received during the evaluation process.
• To identify specific areas where donors found information useful or desired additional details.

Main Methods:

• Conducted semistructured telephone interviews with 81 past living kidney donors.
• Assessed the perceived usefulness, understanding, and satisfaction with Centers for Medicare and Medicaid Services (CMS)-mandated information.
• Gathered data on desired additional information regarding donation.

Main Results:

• Perceived usefulness of mandated information varied, with higher ratings for postoperative care and short-term risks (mean 4.1) and lower for communication confidentiality (mean 3.1).
• Donors from minority backgrounds, with higher education and lower income, found the provided information more useful.
• A significant majority desired more information on insurance implications (health, disability, life) after donation (77.8%) and future health coverage (66.7%).

Conclusions:

• Certain CMS-mandated topics have limited perceived usefulness for living kidney donors.
• There is a clear need for enhanced information regarding post-donation insurance risks.
• Standardizing the informed consent process should integrate donor feedback on content, quantity, and communication methods for living donation.