Partnering with Living Donors in the Development of Long-Term Follow-Up Data Collection Instruments.

Area of Science:

• Transplant medicine
• Patient-centered outcomes research

Background:

• Long-term outcomes for living kidney and liver donors are not well understood.
• Patient-centered outcomes are crucial for improving donor knowledge and counseling.

Purpose of the Study:

• To prioritize data elements for long-term collection and reporting based on living donor input.
• To ensure living donors and candidates drive patient-centered data collection efforts.

Main Methods:

• Living donors on the Scientific Registry of Transplant Recipients' Living Donor Steering Committee were engaged.
• A brainstorming and prioritization exercise was conducted to identify critical data elements.

Main Results:

• Critical long-term outcomes identified: long-term lab values, difficulty with daily activities, and chronic kidney/liver disease diagnosis.
• High-priority elements include short-term labs, donation-related deaths, donor mortality vs. nondonors, readmissions, costs, physical limitations, and donor re-donation willingness.
• Donors desire knowledge on organ failure risk compared to nondonors.

Conclusions:

• Living donor input is vital for defining meaningful long-term outcome measures.
• Prioritized data elements will enhance long-term follow-up and reporting for living donors and candidates.
• This approach ensures research aligns with donor priorities and improves the living donation experience.