ELIPSY, Euro Living Donor Psychosocial Follow-up


This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2008-2013.

Tools



What is ELIPSY?

The main objective of the ELIPSY project is to contribute to guarantee the good quality of organ living donation for transplant through a living donor long-term psychosocial and quality of life follow-up. Also to correlate those aspects with the recipient’s outcome with the creation of a follow-up methodology.


The main objective of the ELIPSY project is to contribute to guarantee the good quality of organ living donation for transplant through a living donor long-term psychosocial and quality of life follow-up. Also to correlate those aspects with the recipient’s outcome with the creation of a follow-up methodology.

Defining this methodology implies also creating tools that will have to be used and standardized with the purpose of setting a protocol that can be used in the future for the living donor follow-up in every European country. That will give an harmonization in the European area in the living donors follow-up studies. With these tools and methodology, it will be possible to detect any negative psychosocial consequences on the living donor related to the recipient’s outcome. And knowing the risks, it will be possible to act and take measures to prevent them. That will contribute to guarantee health and safety in psychosocial terms of living donors with the contribution to harmonize the proceedings in Europe.

The project will establish a validated strategy for the living donor follow-up by:

  • Designing living donor follow-up tools and methodologies, based on a survey of current practices, considering the psychosocial well-being, quality of life and perception of the process to evaluate the impact of the donation process on the donor.
  • Designing a recipient follow-up methodology, based on a survey of current practices, using the best indicators with the purpose to link recipient’s outcome to the living donor’s follow-up.
  • Testing the methodology and tools developed in the partners' countries in a prospective study during a period of 15 months. The study will be designed to compare the psychosocial well-being and quality of life of the donors before and after donation, and in this way study the impact of the donation process. The impact of the recipient’s outcome on the well-being of the donor will also be addressed.
  • Testing the methodology and tools developed in a retrospective study, assessing the long-term impact of donation and the impact of the recipient’s outcome on the donor. Psychosocial well-being, quality of life and impact of recipient’s outcome data will be collected for a period of 15 months from donors who donated one, three and five years age.

Some European countries have carried out living donor follow-up studies. Those studies have been done using different methodologies and tools and very few considered linking the living donor long-term follow-up to the recipient’s outcome. Also, most studies considered only living kidney donors.

The recipient’s outcome is an important factor to be analyzed, because psychosocial evolution of living donors could be related to the recipient’s outcome. By knowing whether there is such a dependence between living donor’s well-being evolution in psychosocial terms and his/her recipient’s evolution, attention should focus on giving the best information to potential donors in the future, to prevent that their decision of becoming a donor could affect in a negative way their quality of life and psychosocial well-being. It is important the study of donor’s and recipient’s outcome at a long-term (1, 3 and 5 years) because most donors make the act of donation for a related recipient, genetically or non-genetically but emotionally. This makes us think that there could be such impact of the recipient’s outcome on the living donor psychosocial well-being.

Considering the importance of having a good psychosocial knowledge about the living donors in a long-term period of time in the european area, using a validated methodology that will have the consensus of all project partners, will ensure representativity and agreement.

The knowledge of negative psychosocial impact in livng donors through the study of those factors associated to the donor and recipient and which have a correlation with the psychosocial impact would contribute to a better donor selection.


Access to Groupware