Towards a conditional approach to anonymity in the Netherlands? – a multi-center prospective study among anonymous donors and recipients

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M. Pronk, D. Slaats, I.M. Dooper, D.B. Pilzecker, J. Vervelde, K.A.M.I. van der Pant, R.A.M. Meijer, M.H. van Vliet, C. Schrauwers, F.E. van Reekum, J.M. Wierdsma, H.J.A. Dackus, P.T.R. Ulrichts, F.J.M.F. Dor, W. Weimar, J. van de Wetering, W. Zuidema, E.K. Massey

Chair(s): dr. A. Nurmohamed

Thursday 9 march 2017

12:45 - 13:00h

Categories: Poster - Klinisch

Parallel session: Postersessie - Klinisch 2

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Anonymity of donors and recipients is a recurrent topic of discussion among transplant professionals . Studies on the donor and patient perspective on anonymity are scarce and mainly cross-sectional in nature, and/or were conducted over a decade ago, prior to the considerable growth in anonymous living programmes. Such studies are needed to include the opinion of donors and patients in policies on anonymity.  This prospective study aimed to fill this gap by investigating donors’ and patients’ experiences with  and attitude towards anonymity.

Individuals who anonymously donated or received a living donor kidney between July 2015 and May 2016 in the Netherlands were asked to complete a questionnaire before surgery (T0) and 3 months after surgery (T1). Questions concerned experiences with and satisfaction about anonymity; their attitude towards anonymity and demographic and medical characteristics. Due to the skewed distribution of the data, non-parametric tests were used to assess group differences and associations between attitude towards anonymity and demographic and medical characteristics, such as type of transplant program (unspecified/specified indirect).

Seventy-two donors and 50 recipients participated in the study (response rates 81% and 63% respectively). Participants were content with anonymity at T0 and T1. Fourteen percent of participants wanted to meet at T0 and 23% wanted to meet at T1. If the other party expressed the wish to meet, 50% (T0) and 55% (T1) would be open for a meeting. Two donors accidentally met their recipient. Most participants agreed with the principle of anonymity both before and after surgery, but also agreed that a meeting should be allowed if both parties agree to that. Attitude towards anonymity was not associated with type of transplant program and did not differ between donors or recipients and between T0 or T1.

Even though the majority of donors and recipients are satisfied with absolute anonymity (for their own procedure), they believed that (other) pairs should be allowed to meet if both parties agree to that. A conditional approach to anonymity would address this desire for autonomy.  If such an approach were to be adopted, this would require effort from transplant professionals to accurately register individuals’ wish to meet and to educate them on potential advantages and disadvantages of non-anonymity. Based on our findings we will provide recommendations for standardized education on anonymity.