European Living Donation and Public Health (EULID Project)

Manyalich, M.; Ricart, A.; Menjívar, Ana; Ballesté, Chloë; Paredes, David; Dias, Leonídio; Hiesse, C; Lewandowska, Dorota; Kyriakides, George; Line, Pål-Dag; Fehrman-Ekholm, Ingela; Asvec, Danica; Costa, Alessandro Nanni; Maxwell, A.; Turcu, R.

doi:10.5772/34544

Cited by 4 publications

(5 citation statements)

References 18 publications

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“…A number of other countries have national donor registries that we may look to for guidance, but their data reporting is incomplete as well (15). The EULID project by the European Commission was designed to establish consensus on living donor practices and stated that, “Any registry proposal must be realistic and, therefore simple; its implementation must be feasible” (15). Certainly creation of a registry with unachievable standards will not improve upon the current OPTN/UNOS data.…”

Section: Approach To a Living Donor Follow‐up Registrymentioning

confidence: 99%

When Good Intentions Are Not Enough: Obtaining Follow-Up Data in Living Kidney Donors

Ommen

Rudow

Medapalli

et al. 2011

American Journal of Transplantation

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The Organ Procurement Transplant Network/United Network for Organ Sharing (OPTN/UNOS) has increased the amount of data collected before and after donation and increased the duration of donor followup to 2 years, yet there is evidence that reporting is incomplete. We examined the frequency of missing data in the OPTN/UNOS donor follow-up registry and found that reporting rates were low, particularly for donors who may have limited access to health care. We argue that a national donor follow-up registry is essential to ensure transparency in ascertaining long-term health outcomes among all living donors and in providing assessments of quality assurance within transplant programs. We have suggested approaches to strengthen the donor follow-up registry system. These include setting clear and high standards for follow-up reporting, a system of incentives and penalties that would motivate transplant centers to comply with these standards and would encourage donors to follow-up and lifelong follow-up reporting by primary care providers. We argue that the US government must provide funding to support a donor follow-up registry that can allow for meaningful and valid conclusions, in recognition of donors' public service and to maintain trust in the system of living organ donation.

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Section: Approach To a Living Donor Follow‐up Registrymentioning

confidence: 99%

When Good Intentions Are Not Enough: Obtaining Follow-Up Data in Living Kidney Donors

Ommen

Rudow

Medapalli

et al. 2011

American Journal of Transplantation

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“…Donors’ satisfaction was assessed by a renewed version of the European Living Donation and Public Health Project (EULID) Satisfaction Survey (ESS) . The ESS included 54 questions developed using Delphi methodology.…”

Section: Methodsmentioning

confidence: 99%

Assessment of donor satisfaction as an essential part of living donor kidney transplantation: an eleven-year retrospective study

et al. 2018

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Living kidney donors seem highly satisfied with donation. However, previous studies measure satisfaction by a single-item or by simply questioning donors' willingness to donate again or to recommend living donation. With the aim of analyzing whether satisfaction with donation is a multidimensional construct, thus allowing a more specific characterization of dissatisfied donors, 332 living kidney donors (2005-2015) answered a renewed version of the European Living Donation and Public Health Project satisfaction survey. Exploratory factor-analyses suggested that satisfaction was composed of three-factors: violation of donors' expectancies about donation; interference of donation on daily activities, and pain and discomfort. Donors reported high levels of satisfaction. However, cluster-analysis identified a subgroup characterized by a higher discrepancy between the expected and the actually experienced during donation, higher interference on daily activities, and higher pain and discomfort. Most of them considered that hospital discharge was premature, suffered economic losses and perceived worse health outcomes of their recipients. Single questions assessing donors' willingness to donate again or to recommend living donation were unable to differentiate between clusters. In summary, donor's satisfaction seems better characterized by three dimensions than by single questions.

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“…Models for the collection of long-term psychosocial outcomes after donation exist internationally, including the European Living Donation and Public Health (EULID) project, an 11-nation registry that uses an online tool for reporting follow-up information included psychosocial and socioeconomic outcomes. 444 The national Swiss Living Donor Health Registry (SOL-DHR) follows donors lifelong and includes an 8-Item Short-Form (SF-8) and social-status questionnaire. 445…”

Section: How Should Transplant Programs Help Donor Candidates and Donmentioning

confidence: 99%

“…The EULID project began with an 11-nation assessment of living donation practices in Europe that recommended mandatory living donor registration and follow-up data collections through a centralized donor database system, and mandatory regulatory audits at the national and center level. 444 An online registry is used for reporting of information on donor health status, quality of informed consent, and psychosocial and socioeconomic outcomes. The European Living Donor Psychosocial Follow-Up (ELIPSY), a study conducted in 6 centers of different European countries (Spain, Germany, France, Portugal, Sweden and Turkey) in 2009 to 2012, focused on monitoring donor psychosocial well-being and quality of life.…”

Section: Donor Registriesmentioning

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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European Living Donation and Public Health (EULID Project)

Cited by 4 publications

References 18 publications

When Good Intentions Are Not Enough: Obtaining Follow-Up Data in Living Kidney Donors

When Good Intentions Are Not Enough: Obtaining Follow-Up Data in Living Kidney Donors

Assessment of donor satisfaction as an essential part of living donor kidney transplantation: an eleven-year retrospective study

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

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