Miscommunicating NOTA Can Be Costly to Living Donors

Mittelman, Michael; Thiessen, Carrie; Chon, W. James; Clayville, Kristel; Cronin, David; Fisher, Jonathan S.; Fry‐Revere, Sigrid; Gross, James A.; Hanneman, J.; Henderson, Macey L.; Ladin, Keren; Mysel, H.; Sherman, Laurence A.; Willock, L.; Gordon, Elisa J.

doi:10.1111/ajt.14036

Cited by 11 publications

(9 citation statements)

References 5 publications

(4 reference statements)

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“…A 2016 convenience sample of informed consent forms for living donor and transplant candidate evaluation from 9 geographically diverse US programs identified misconceptions about defraying donation-related costs, reinforced by ambiguous language or omissions in the donor informed consent documents. 437 Donor candidates should receive clear, accurate education on how to access available financial support as well as the limitations of available resources. In 2016, the AST launched an online financial toolkit to help donor candidates learn about the finances of being a living organ donor; this dynamic resource will be expanded and updated over time.…”

Section: Disclosures and Supportmentioning

confidence: 99%

Survival in Living Kidney Donors: An Australian and New Zealand Cohort Study Using Data Linkage

Mata

Clayton

Kelly

et al. 2020

Transplantation Direct

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The 2017 Kidney Disease: Improving Global Outcomes (KDIGO) Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors is intended to assist medical professionals who evaluate living kidney donor candidates and provide care before, during and after donation. The guideline development process followed the Grades of Recommendation Assessment, Development, and Evaluation (GRADE) approach and guideline recommendations are based on systematic reviews of relevant studies that included critical appraisal of the quality of the evidence and the strength of recommendations. However, many recommendations, for which there was no evidence or no systematic search for evidence was undertaken by the Evidence Review Team, were issued as ungraded expert opinion recommendations. The guideline work group concluded that a comprehensive approach to risk assessment should replace decisions based on assessments of single risk factors in isolation. Original data analyses were undertaken to produce a "proof-in-concept" risk-prediction model for kidney failure to support a framework for quantitative risk assessment in the donor candidate evaluation and defensible shared decision making. This framework is grounded in the simultaneous consideration of each candidate's profile of demographic and health characteristics. The processes and framework for the donor candidate evaluation are presented, along with recommendations for optimal care before, during, and after donation. Limitations of the evidence are discussed, especially regarding the lack of definitive prospective studies and clinical outcome trials. Suggestions for future research, including the need for continued refinement of long-term risk prediction and novel approaches to estimating donation-attributable risks, are also provided.

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Section: Disclosures and Supportmentioning

confidence: 99%

Survival in Living Kidney Donors: An Australian and New Zealand Cohort Study Using Data Linkage

Mata

Clayton

Kelly

et al. 2020

Transplantation Direct

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“…A 2016 convenience sample of informed consent forms for living donor and transplant candidate evaluation from nine geographically diverse programs in the United States identified misconceptions about defraying donation-related costs, reinforced by ambiguous language or omissions in the donor informed consent documents (73). Living donor candidates should receive counseling about financial costs and risks before donation, information about the availability of legal cost replacement programs, and assistance in accessing legitimate cost replacement programs.…”

Section: Financial Risksmentioning

confidence: 99%

Risks of Living Kidney Donation

Lentine¹,

Lam²,

Segev³

2019

CJASN

105

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In the past decade, there have been increasing efforts to better define and quantify the short-and long-term risks of living kidney donation. Recent studies have expanded upon the previous literature by focusing on outcomes that are important to potential and previous donors, applying unique databases and/or registries to follow large cohorts of donors for longer periods of time, and comparing outcomes with healthy nondonor controls to estimate attributable risks of donation. Leading outcomes important to living kidney donors include kidney health, surgical risks, and psychosocial effects of donation. Recent data support that living donors may experience a small increased risk of severe CKD and ESKD compared with healthy nondonors. For most donors, the 15-year risk of kidney failure is <1%, but for certain populations, such as young, black men, this risk may be higher. New risk prediction tools that combine the effects of demographic and health factors, and innovations in genetic risk markers are improving kidney risk stratification. Minor perioperative complications occur in 10%-20% of donor nephrectomy cases, but major complications occur in <3%, and the risk of perioperative death is <0.03%. Generally, living kidney donors have similar or improved psychosocial outcomes, such as quality of life, after donation compared with before donation and compared with nondonors. Although the donation process should be financially neutral, living kidney donors may experience out-of-pocket expenses and lost wages that may or may not be completely covered through regional or national reimbursement programs, and may face difficulties arranging subsequent life and health insurance. Living kidney donors should be fully informed of the perioperative and long-term risks before making their decision to donate. Follow-up care allows for preventative care measures to mitigate risk and ongoing surveillance and reporting of donor outcomes to inform prior and future living kidney donors.

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“…The scope of reimbursement for the expenses incurred by living donors or families of deceased donors, including out-of-pocket costs and lost earnings, should be clearly defined by law, transparently administered, and carefully communicated to people making a decision about donation. 19 Specifying items for reimbursement may not be appropriate within legislation since these may change over time. However, it is important to establish a legal framework that upholds the principle of financial neutrality and that will support the implementation of transparent and efficient systems to assist donors in avoiding or recovering costs.…”

Section: Principlesmentioning

confidence: 99%

Strengthening Global Efforts to Combat Organ Trafficking and Transplant Tourism: Implications of the 2018 Edition of the Declaration of Istanbul

Martin

Assche

Domínguez‐Gil

et al. 2019

Transplantation Direct

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The 2018 Edition of the Declaration of Istanbul on Organ Trafficking and Transplant Tourism (DoI) provides an updated set of principles and definitions to guide policymakers and health professionals working in organ donation and transplantation. A draft of the new edition was circulated to the public and transplant professionals through an online consultation process, which also sought feedback on a draft explanatory article that explained the principles and discussed some of their practical implications. Both drafts were revised in response to feedback from participants in the consultation. We present here the discussion article, which is intended to assist stakeholders in applying the principles of the DoI by providing more detailed information about the meaning and potential implications of implementing the DoI in various contexts.

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Miscommunicating NOTA Can Be Costly to Living Donors

Cited by 11 publications

References 5 publications

Survival in Living Kidney Donors: An Australian and New Zealand Cohort Study Using Data Linkage

Survival in Living Kidney Donors: An Australian and New Zealand Cohort Study Using Data Linkage

Risks of Living Kidney Donation

Strengthening Global Efforts to Combat Organ Trafficking and Transplant Tourism: Implications of the 2018 Edition of the Declaration of Istanbul

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