Abstract:Background
As live donor liver transplantation is increasingly used to expand the donor pool, concerns remain regarding ensuring live liver donors' informed consent. This study assessed donors' information preferences and perceptions of informed consent.
Methods
Cognitive interviews were conducted with donors by telephone about how knowledge items in a new survey instrument were material to informed consent, between November 2011 and April 2012. Thematic analysis was used to analyze qualitative data until re… Show more
“…In conclusion, there seems to be a large variation in the knowledge and attitudes of transplant professionals in Europe regarding which possible long-term risks should be discussed with potential kidney donors, how these risks should be disclosed and how the written information should be used. It is likely that potential living donors would like to receive detailed information regarding potential future risks [ 34 ]. Providing information to potential donors is complicated and often demands an individual approach and adequate time and resources.…”
Background
Publications from the last decade have increased knowledge regarding long-term risks after kidney donation. We wanted to perform a survey to assess how transplant professionals in Europe inform potential kidney donors regarding long-term risks. The objectives of the survey were to determine how they inform donors, to what extent, and to evaluate the degree of variation.
Methods
All transplant professionals involved in the evaluation process were considered eligible, regardless of the type of profession. The survey was dispatched as a link to a web-based survey. The subjects included questions on demographics, the information policy of the respondent and the use of risk calculators, including the difference of relative and absolute risks, and how the respondents themselves understood these risks.
Results
The main finding was a large variation in how often different long-term risks were discussed with the potential donors, i.e. from always to never. Eighty percent of respondents stated that they always discuss the risk of end stage renal disease, while fifty-six percent of respondents stated that they always discuss the risk of preeclampsia. Twenty percent of respondents answered correctly regarding the relationship between absolute and relative risks for rare outcomes.
Conclusions
The use of written information and checklists should be encouraged. This may improve standardization regarding the information provided to potential living kidney donors in Europe. There is a need for information and education among European transplant professionals regarding long-term risks after kidney donation and how to interpret and present these risks.
“…In conclusion, there seems to be a large variation in the knowledge and attitudes of transplant professionals in Europe regarding which possible long-term risks should be discussed with potential kidney donors, how these risks should be disclosed and how the written information should be used. It is likely that potential living donors would like to receive detailed information regarding potential future risks [ 34 ]. Providing information to potential donors is complicated and often demands an individual approach and adequate time and resources.…”
Background
Publications from the last decade have increased knowledge regarding long-term risks after kidney donation. We wanted to perform a survey to assess how transplant professionals in Europe inform potential kidney donors regarding long-term risks. The objectives of the survey were to determine how they inform donors, to what extent, and to evaluate the degree of variation.
Methods
All transplant professionals involved in the evaluation process were considered eligible, regardless of the type of profession. The survey was dispatched as a link to a web-based survey. The subjects included questions on demographics, the information policy of the respondent and the use of risk calculators, including the difference of relative and absolute risks, and how the respondents themselves understood these risks.
Results
The main finding was a large variation in how often different long-term risks were discussed with the potential donors, i.e. from always to never. Eighty percent of respondents stated that they always discuss the risk of end stage renal disease, while fifty-six percent of respondents stated that they always discuss the risk of preeclampsia. Twenty percent of respondents answered correctly regarding the relationship between absolute and relative risks for rare outcomes.
Conclusions
The use of written information and checklists should be encouraged. This may improve standardization regarding the information provided to potential living kidney donors in Europe. There is a need for information and education among European transplant professionals regarding long-term risks after kidney donation and how to interpret and present these risks.
“…The ethical requirement to obtain informed consent is important in any medical intervention, but it is particularly so in the case of living organ donations, a procedure that offers no medical benefits to the donors. 40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation. 39 An adequate disclosure in the context of trans-organ exchanges requires that clinicians provide information that could make a difference to whether donors and recipients wish to participate in such exchanges and that they do so in ways that do not overwhelm donors and recipients.…”
Section: Valid Informed Consentmentioning
confidence: 99%
“…19 Consent is appropriately informed when a capacitated or competent individual, who receives adequate disclosures and understands what has been disclosed, voluntarily consents to the procedure. [40][41][42] Like in all living organ donations, donors and recipients should be informed of possible outcomes, short and long-term risks, potential health and psychological benefits, financial costs, as well as alternative treatment options available to the recipient. 40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation.…”
Section: Valid Informed Consentmentioning
confidence: 99%
“…39 An adequate disclosure in the context of trans-organ exchanges requires that clinicians provide information that could make a difference to whether donors and recipients wish to participate in such exchanges and that they do so in ways that do not overwhelm donors and recipients. 40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation. [40][41][42] Like in all living organ donations, donors and recipients should be informed of possible outcomes, short and long-term risks, potential health and psychological benefits, financial costs, as well as alternative treatment options available to the recipient.…”
Section: Valid Informed Consentmentioning
confidence: 99%
“…40 Of course, the need for appropriate disclosure is the same for trans-organ exchanges and cases of same-organ exchanges, or the simple case of living donation. [40][41][42] Like in all living organ donations, donors and recipients should be informed of possible outcomes, short and long-term risks, potential health and psychological benefits, financial costs, as well as alternative treatment options available to the recipient. But clinicians will need to pay particular attention to information regarding the unequal risks imposed on the donors in trans-organ donation exchanges.…”
Living donation provides important access to organ transplantation, which is the optimal therapy for patients with end-stage liver or kidney failure. Paired exchanges have facilitated thousands of kidney transplants and enable transplantation when the donor and recipient are incompatible. However, frequently willing and otherwise healthy donors have contraindications to the donation of the organ that their recipient needs. Trans-organ paired exchanges would enable a donor associated with a kidney recipient to donate a lobe of liver and a donor associated with a liver recipient to donate a kidney. This article explores some of the ethical concerns that trans-organ exchange might encounter including unbalanced donor risks, the validity of informed consent, and effects on deceased organ donation.
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