Background: Maintaining anonymity is a requirement in the Netherlands and Sweden for kidney donation from live donors in the context of nondirected (or unspecified) and paired exchange (or specified indirect) donation. Despite this policy, some donors and recipients express the desire to know one another. Little empirical evidence informs the debate on anonymity. This study explored the experiences, preferences, and attitudes of donors and recipients toward anonymity. Study Design: Retrospective observational multicenter study using both qualitative and quantitative methods. Setting & Participants: 414 participants from Dutch and Swedish transplantation centers who received or donated a kidney anonymously (nondirected or paired exchange) completed a questionnaire about anonymity. Participation was a median of 31 months after surgery. Factors: Country of residence, donor/recipient status, transplant type, time since surgery. Outcomes: Experiences, preferences, and attitudes toward anonymity. Results: Most participants were satisfied with their experience of anonymity before and after surgery. A minority would have liked to have met the other party before (donors, 7%; recipients, 15%) or after (donors, 22%; recipients, 31%) surgery. Significantly more recipients than donors wanted to meet the other party. Most study participants were open to meeting the other party if the desire was mutual (donors, 58%; recipients, 60%). Donors agree significantly more with the principle of anonymity before and after surgery than recipients. Donors and recipients thought that if both parties agreed, it should be permissible to meet before or after surgery. There were few associations between country or time since surgery and experiences or attitudes. The pros and cons of anonymity reported by participants were clustered into relational and emotional, ethical, and practical and logistical domains. Limitations: The relatively low response rate of recipients may have reduced generalizability. Recall bias was possible given the time lag between transplantation and data collection. Conclusions: This exploratory study illustrated that although donors and recipients were usually satisfied with anonymity, the majority viewed a strict policy on anonymity as unnecessary. These results may inform policy and education on anonymity.

Additional Metadata
Keywords Anonymity, End-stage renal disease (ESRD), Kidney exchange programs, Live kidney donation, Medical ethics, Nodirected kidney donor, Non-directed donation, Paired exchange, Patient-centered care, Renal transplantation, Transplant recipient
Persistent URL dx.doi.org/10.1053/j.ajkd.2017.07.014, hdl.handle.net/1765/103096
Journal American Journal of Kidney Diseases
Citation
Slaats, D. (Dorthe), Lennerling, A, Pronk, M.C. (Mathilde C.), van der Pant, K.A, Dooper, I.M, Wierdsma, J.M, … Massey, E.K. (2017). Donor and Recipient Perspectives on Anonymity in Kidney Donation From Live Donors: A Multicenter Survey Study. American Journal of Kidney Diseases. doi:10.1053/j.ajkd.2017.07.014