Toward a conditional approach to anonymity? An explorative multicenter longitudinal study among anonymous living kidney donors and recipients

Pronk, Mathilde C.; Slaats, Dorthe; Pant, Karlijn A M I van der; Vervelde, Janneke; Dooper, Ine M. M.; Dor, Frank J. M. F.; Weimar, Willem; Wetering, Jacqueline van de; Zuidema, Willij C.; Massey, Emma K.

doi:10.1111/tri.13016

Cited by 13 publications

(22 citation statements)

References 12 publications

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“…36 In The Netherlands and Sweden, where absolute anonymity is maintained long-term, 2 studies found that the majority were comfortable with having had anonymity maintained; however, the majority felt that if both donor and recipient wanted to meet after the transplant, it should be allowed. 36 In The Netherlands and Sweden, where absolute anonymity is maintained long-term, 2 studies found that the majority were comfortable with having had anonymity maintained; however, the majority felt that if both donor and recipient wanted to meet after the transplant, it should be allowed.…”

Section: Discussionmentioning

confidence: 99%

“…Policies regarding long-term NDD/recipient anonymity differ among countries. 36 In The Netherlands and Sweden, where absolute anonymity is maintained long-term, 2 studies found that the majority were comfortable with having had anonymity maintained; however, the majority felt that if both donor and recipient wanted to meet after the transplant, it should be allowed. 7,36 As noted above, we maintain anonymity for 6 months as a "protection" for both donor and recipient to physically recover.…”

Section: Massey Et Al Found That Ndds Valued Benevolence Independencementioning

confidence: 99%

“…36 In The Netherlands and Sweden, where absolute anonymity is maintained long-term, 2 studies found that the majority were comfortable with having had anonymity maintained; however, the majority felt that if both donor and recipient wanted to meet after the transplant, it should be allowed. 7,36 As noted above, we maintain anonymity for 6 months as a "protection" for both donor and recipient to physically recover. Most NDDs agreed that there should be donor/recipient anonymity at the time of surgery; however, 48% felt that some basic recipient information should be shared with the donor at the time of surgery.…”

Section: Massey Et Al Found That Ndds Valued Benevolence Independencementioning

confidence: 99%

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Long-term psychosocial outcomes after nondirected donation: A single-center experience

Jacobs

Berglund

Wiseman

et al. 2019

American Journal of Transplantation

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Short‐term studies have demonstrated that nondirected donors (NDDs) have psychosocial outcomes that are similar to donors who donate directly, but long‐term studies have not been done. NDDs at our center were surveyed regarding motivation; support during donation; stress related to donation; regret; financial resources used for donation; preferences about communication with the recipient; and cost reimbursement. Of 100 NDDs who donated at our center in the last 20 years, 95 remain in contact with us, and 77 responded to our survey (mean ± standard deviation [SD] 6.7 ± 4 years postdonation). The most common motivation for donation was the desire to help another (99%). Many NDDs received support from family, friends, and employers. NDDs voiced stress about the possibility of recipient kidney rejection, physical consequences to themselves, and financial burden. Only one donor expressed regret. Almost half wanted some recipient information at donation; 61% preferred routine recipient status updates; 56% believed meeting the recipient should occur at any mutually agreeable time; and 55% endorsed reimbursement for expenses. Stressors for NDDs are analogous to those of directed donors; NDDs prefer having some information about the recipient and prefer to be given a choice regarding the timing for communication with the recipient. NDDs supported donation being financially neutral.

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Section: Discussionmentioning

confidence: 99%

Section: Massey Et Al Found That Ndds Valued Benevolence Independencementioning

confidence: 99%

“…36 In The Netherlands and Sweden, where absolute anonymity is maintained long-term, 2 studies found that the majority were comfortable with having had anonymity maintained; however, the majority felt that if both donor and recipient wanted to meet after the transplant, it should be allowed. 7,36 As noted above, we maintain anonymity for 6 months as a "protection" for both donor and recipient to physically recover. Most NDDs agreed that there should be donor/recipient anonymity at the time of surgery; however, 48% felt that some basic recipient information should be shared with the donor at the time of surgery.…”

Section: Massey Et Al Found That Ndds Valued Benevolence Independencementioning

confidence: 99%

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Long-term psychosocial outcomes after nondirected donation: A single-center experience

Jacobs

Berglund

Wiseman

et al. 2019

American Journal of Transplantation

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“…Conditional approach[ 38 ]: When the donor-recipient pairs give consent for meeting after surgery, they are allowed to meet each other after surgery in some countries such as the United States of America[ 39 ] and the United Kingdom[ 40 ]. In other countries, such as the Netherlands and Sweden[ 41 ], anonymity is absolute.…”

Section: Pros and Cons Of Anonymity In Developed World And (Non-) Anomentioning

confidence: 99%

“…An Ethical, Legal and Psychosocial Aspects of Organ Transplantation (ELPAT), a subsection of the European Society for Organ Transplantation reported that a conditional approach to anonymity should be possible after surgery[ 42 ]. Pronk et al[ 38 ] showed that most donor-recipient pairs who participated in anonymous donation process are in favour of a conditional approach to anonymity. Guidelines on how to revoke anonymity if both parties agree are needed and should include education about pros and cons of (non-) anonymity and a logistical plan on how, when, where, and by whom anonymity should be revoked.…”

Section: Pros and Cons Of Anonymity In Developed World And (Non-) Anomentioning

confidence: 99%

Kidney exchange transplantation current status, an update and future perspectives

Kute¹,

Prasad²,

Shah³

et al. 2018

WJT

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Kidney exchange transplantation is well established modality to increase living donor kidney transplantation. Reasons for joining kidney exchange programs are ABO blood group incompatibility, immunological incompatibility (positive cross match or donor specific antibody), human leukocyte antigen (HLA) incompatibility (poor HLA matching), chronological incompatibility and financial incompatibility. Kidney exchange transplantation has evolved from the traditional simultaneous anonymous 2-way kidney exchange to more complex ways such as 3-way exchange, 4-way exchange, n-way exchange,compatible pair, non-simultaneous kidney exchange,non-simultaneous extended altruistic donor, never ending altruistic donor, kidney exchange combined with desensitization, kidney exchange combined with ABO incompatible kidney transplantation, acceptable mismatch transplant, use of A2 donor to O patients, living donor-deceased donor list exchange, domino chain, non-anonymous kidney exchange, single center, multicenter, regional, National, International and Global kidney exchange. Here we discuss recent advances in kidney exchanges such as International kidney exchange transplantation in a global environment, three categories of advanced donation program, deceased donors as a source of chain initiating kidneys, donor renege myth or reality, pros and cons of anonymity in developed world and (non-) anonymity in developing world, pros and cons of donor travel vs kidney transport, algorithm for management of incompatible donor-recipient pairs and pros and cons of Global kidney exchange. The participating transplant teams and donor-recipient pairs should make the decision by consensus about kidney donor travel vs kidney transport and anonymity vs non-anonymity in allocation as per local resources and logistics. Future of organ transplantation in resource-limited setting will be liver vs kidney exchange, a legitimate hope or utopia?

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Anonymity: What does it mean and why is it important to anonymous living liver donors?

et al. 2022

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Anonymous living organ donation has recently become more common in select transplantation programs, with donors voluntarily offering a kidney or a lobe of their liver to those in need. These anonymous donations may be directed to a specific recipient or nondirected, and anonymity may be one way or reciprocal. Given their unique situation, we interviewed a cohort of anonymous living liver donors and explored their opinions surrounding anonymity and its implications in living liver donation. A total of 26 anonymous donors completed a semistructured qualitative interview consisting of questions regarding their experiences as a living liver donor. The interviews were audiorecorded, transcribed, and analyzed for common themes, specifically those pertaining to the donor's perceptions and experiences with anonymity. Five main themes related to anonymity were identified: (1) the moral importance of an unencumbered gift, (2) wanting internal satisfaction rather than seeking external accolades, (3) anonymity as a protection against potential negative outcomes in the recipient, (4) feelings of ambivalence toward meeting the recipient, and (5) concerns about negative perceptions among their own friends and family. These insights into the range of donors' attitudes toward anonymity will help improve awareness and provide the best possible mental and physical care for the anonymous donor.

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Toward a conditional approach to anonymity? An explorative multicenter longitudinal study among anonymous living kidney donors and recipients

Cited by 13 publications

References 12 publications

Long-term psychosocial outcomes after nondirected donation: A single-center experience

Long-term psychosocial outcomes after nondirected donation: A single-center experience

Kidney exchange transplantation current status, an update and future perspectives

Anonymity: What does it mean and why is it important to anonymous living liver donors?

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