Experiences of Unanticipated Outcomes Among Ethnically Diverse Living Kidney Donors: A Qualitative Pilot Study

Although living kidney donation is generally considered a safe procedure, it is ethically critical that prospective donors are fully informed before consent. However, prospective donors lack a deep understanding of the donation experience, making the postdonation aftermath feel unanticipated. We sought to gain in-depth qualitative descriptions of the short- and long-term risks and benefits associated with kidney donation among an ethnically diverse group of donors to offer a balanced view of the positive and negative experiences that may occur postdonation.

We conducted individual narrative in-depth interviews (September 2020-March 2021) using the DIPEx (database of individual patient experiences) method with former living kidney donors primarily via Zoom.

Fourteen donors (10 women; 8 White, 5 Hispanic, and 1 Native American) completed interviews. Interactions with healthcare providers leading up to donation were largely positive; however, lack of clarity regarding postdonation laboratory values among primary care providers led three participants to be erroneously told they developed kidney disease. Most experienced unanticipated outcomes, including postsurgical complications (e.g., hernia), long-term fatigue (i.e., ≥12 weeks), emotional distress (e.g., depression), hypertension, and gout. Difficulty obtaining life insurance following donation was an unexpected challenge. Despite these issues, participants were unanimously enthusiastic about living kidney donation and reported no regrets.

Enthusiasm for living kidney donation remained high among all participants despite most experiencing negative outcomes. These findings suggest that greater transparency regarding postdonation experiences may not preclude the decision to move forward with living kidney donation. These narratives will be utilized for an online module of lived experiences of donation.