What lessons can be learned from the UK experience of (relinquishing) anonymity?

E.K. Massey, M.C. Pronk, D. Slaats, L. Burnapp

Thursday 15 march 2018

16:25 - 16:35h at Van Rijck/Ruys Zaal

Categories: Session (parallel), Coördinatiesessie

Parallel session: Parallel session 10: Transplant coordination

Introduction

Anonymous living kidney donation is carried out in a limited number of European countries such as the UK, the Netherlands and Sweden. The UK differs from other countries in that the donor and recipient may meet one another after the operation. In Sweden and the Netherlands anonymity is absolute. A recent study in the Netherlands and Sweden indicated that donors and recipients feel they should be allowed to choose whether or not to relinquish anonymity. To date there is little exploration of how contact/meetings after ‘anonymous’ donation in the UK are experienced. These experiences could help inform Dutch policy.

Methods

A self-report questionnaire with return envelope was sent to anonymous donors and recipients via post. Potential participants had given/received a kidney via the national exchange programme or in a domino-paired procedure in the UK. Questions were specifically developed for this survey. Satisfaction with (relinquished) anonymity was rated on a scale of 1-7. As data were not normally distributed, the median and range is presented and non-parametric tests were conducted.

Results

211 recipients and 355 donors returned the questionnaire. Anonymity had been relinquished among 25 (1%) of recipients and 29 (8%) of donors after surgery. Five recipients had met their donor. Among the non-anonymous group, recipients were content that they were not anonymous (mdn=7, range 1-7), and the experience of contact/meetings was positive (mdn=7, range 6-7). Similarly, donors were content that they were not anonymous (mdn=7, range 3-7) and experienced contact/meetings positively although experiences were more mixed (mdn=7, range 3-7). Recipients who remained anonymous were generally content with anonymity after surgery (mdn=7, range 1-7), however, 70 (39%) report that they would have liked to have had some kind of contact with the donor to express their gratitude. Similarly, donors who remained anonymous were generally also content (mdn=7, range 1-7), however, 116 (36%) would have liked to have had some kind of contact out of curiosity regarding the outcome.

Discussion

The few donors and recipients who had contact/meeting experienced this positively. Findings support the option of voluntary contact and the potential to meet after anonymous living donor transplantation.