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Donor and Recipient Perspectives on Anonymity in Kidney Donation From Live Donors: A Multicenter Survey Study

Artikel i vetenskaplig tidskrift
Författare D. Slaats
Annette Lennerling
M. C. Pronk
Kami van der Pant
I. M. Dooper
J. M. Wierdsma
C. Schrauwers
H. Maple
J. V. de Wetering
W. Weimar
W. C. Zuidema
N. Mamode
Fjmf Dor
E. K. Massey
Publicerad i American Journal of Kidney Diseases
Volym 71
Nummer/häfte 1
Sidor 52-64
ISSN 0272-6386
Publiceringsår 2018
Publicerad vid Institutionen för vårdvetenskap och hälsa
Sidor 52-64
Språk en
Länkar doi.org/10.1053/j.ajkd.2017.07.014
Ämnesord organ donation, living donors, transplantation, exchange, program, experiences, outcomes, elpat, Urology & Nephrology
Ämneskategorier Klinisk medicin

Sammanfattning

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. Results: Most participants were satisfied with their experience of anonymity before and aftersurgery. 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.

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