www.eulivingdonor.eu eulid project european living donation and public health martí manyalich,...

www.eulivingdonor.eu

EULID PROJECT European Living Donation and Public Health

Martí Manyalich, Assumpta Ricart, Chloë Ballesté, David Paredes, Christian Hiesse, Leonídio Dias, Ingela Fehrman-Ekholm, Andy Maxwell, Rosana Turcu, Pål-Dag Line, Danica Avsec, Dorota Lewandowska, Niclas Kvarnström, Carlo De Cillia, Alessandro

Nanni Costa, Janusz Walaszezski, Christophe Legendre, Garabet Khasho, George Kyriakides and Victor Gheorghe Zota.

This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2003-2008


To analyze the current European situation regarding legal, ethical,

protection and registration practices related to living organ

donation, in order to set standards and recommendations that

guarantee the living donor health and safety.


MAIN OBJECTIVE



Contribute to consensus and establish recommendations to

ensure the health and safety of the living donor among European

countries

Legal aspects

Consensus Tools

Satisfaction survey

On-line data base

Informative leaflet

Ethical dilemmas

LD protection

Registry model

RESULTS


RESULTS

LEGISLATION

Prohibition and penalization of organ trafficking, transplant tourism and commercialism, including incentives.

Prohibition of minors and persons unable to give consent.

Authorization of transplant centers and registry of LD under the control of authorities.

Regulation of independent commission (evaluation, information, approval).

Reimbursement of expenses related to donation and provisions to protect donors and their families from discrimination, permanent injury or death.

Consensus/Final recommendations



RESULTSConsensus/Final

recommendations

ETHICAL

The altruism of LD should be object of the most elevated consideration by the community.

The promotion of LD should not impede cadaveric donation and its development to its maximal potential.

Organ trafficking, commercialism or incentives are ethically unacceptable and should be banned.

LD candidates should be protected against any form of physical, psychological, social or economical disadvantage

The autonomy of the LD to decide to be a donor does not surpass appropriate medical decision-making based on evaluation risk.

The reimbursement model should be implemented by health authorities to protect donors.



RESULTSConsensus/Final

recommendations

PROTECTION

Sick leave with 100% payment and socio-medical and protective support if sick leave is prolonged.

There should be no cost to the donor for the evaluation of medical and psychosocial suitability nor for the donor surgical procedure.

Financial coverage in case of unforeseen events related with the donation process.

Medical follow-up obligated and psychosocial support if needed.

Living donation should not be a limitation for getting a life insurance, mortgage as well as any other social assistance or benefit.

Homogeneous protection systems within the European Union with a defined minimum standard



RESULTS

INFORMATIVE LEAFLET

Translated in 12 languages, 2 different parts with information for each organ about: options to become a donor, investigations and selection, surgical approach, normal course and adverse events and long-term follow-up.

Translated in 12 languages, 2 different parts with information for each organ about: options to become a donor, investigations and selection, surgical approach, normal course and adverse events and long-term follow-up.

TOOLS DEVELOPED



RESULTSTOOLS DEVELOPED

LIVING DONOR SATISFACTION SURVEY



RESULTSSURVEY PERFORMED

240 surveys have been performed among living donors European citizens



RESULTSInformation, perception and acceptance of the

donation process

GENERAL EVALUATION

Information, perception and acceptance of the

donation process

EXAMPLES



RESULTSQuality of life

GENERAL EVALUATION

Quality of life

EXAMPLES



RESULTSPsychological well-being

GENERAL EVALUATION

Psychological well-being

EXAMPLES



RESULTS

EXCELLENCE

RECOMMENDED

OBLIGATORY

Donor and recipient Nationality, Residence, Donor recipient Relationship, Type of living organ allocation, Type of organ, status

Clinical parameters (weight, length, clinical kidney and liver laboratory parameters, systolic and diastolic blood pressure, complications such as surgical re-intervention, pain, wound complications)

Satisfaction survey, Quality control, Quality of life, Psychological complications



EXTERNAL EVALUATION

“The main objective if this project analyzing the current European situation regarding legal, ethical, protection and registration practices related to living organ donation, giving opportunity to set up high quality standards for its practice, is of utmost importance not only to the European continent but also

to all the word over” JO. Medina-Pestana

ASSESSORS:• Francis L. Delmonico:

Director of Medical Affairs for The Transplantation SocietyAdvisor to the Word Health OrganizationProfessor of Surgery at Harvard Medical SchoolMedical Director of the New England Organ Bank in Newton, Massachusetts

• José O. Medina-Pestana:Full Professor of Medicine. Federal University of São Paulo BrazilHead of Renal Transplantation Unit. Hospital do Rim e Hipertensão. São Paulo.



DISEMINATION • V International Meeting on Living Donor Liver and Kidney Transplantation held in

Barcelona on November 2007.

• XXIII Reunión Nacional de Coordinadores de Trasplantes. Zaragoza, Spain, June 2008.

• 5th ETCO Annual Meeting, Riga, Latvia, October 2008.

• 10th Congress of the Catalan Transplant Society. Barcelona, Spain, February 2009.

• XXIV Reunión Nacional de Coordinadores de Trasplantes. Barcelona, Spain, May 2009.

• 4th ESOT Congress. Paris, France, October 2009.

• 10th ISODP and 16th ETCO Organ Donation Congress. Berlin, Germany, October 2009.

• 2nd ELPAT Congress. Rotterdam, Netherlands, April 2010.

• 1er Congreso Sociedad Española de Trasplante. Sevilla, Spain, June 2010.



DISEMINATION • XXIII International Congress of The Transplantation Society. Vancouver, Canada,

August 2010.

• Living kidney Donor Follow-up: State of the art and future directions. Washington, EEUU, September 2010.

• European Organ Donation Congress, 22nd ETCO, Cardiff, Wales, UK, September 2010.

• 12TH Congress of the Middle East Society for Organ Transplantation (MESOT), Tunisia, October 2010.

• 5º Convegno Nazionale dell’OCST. Organizzaziones Centro Sud Trapianti. Sardinia, Italy, October 2010.

• 11º Congrés Societat Catalana de Trasplantament. Barcelona, March 2011.

• 15th Congress of the European Society for Organ Transplantation. Glasgow, Scotland. September 4-7, 2011.

• 12th Congress of the Asian Society of Transplantation. Seoul, Korea. September 25-28, 2011.



CONCLUSIONS

•The project contributes to a European consensus on legal and ethical issues that could lead to best practices.

•The protection of living donors should be done through laws and regulations as well as giving information and performing a follow-up.



E-mail: [email protected]

www.eulivingdonor.eu/lidobs

LIDOBSLiving Donor Observatory

www.eulivingdonor.eu eulid project european living donation and public health martí manyalich,...

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