title: [Quality of life of living kidney donor: a national report].
abstract: The renal transplantation is nowadays the reference treatment of ESRD. Living donor kidney transplantation is less often performed in France than in other countries. Nevertheless, numerous French and international surveys have evidenced that it provides the recipients a longer life expectancy and a better quality of life. Donors themselves, what do they become? How are they? For the first time in France, a survey has been implemented to investigate the quality of life of living kidney donor to one of their close relations. This study has been undertaken by the Agency of the biomedecine and the service Clinical Epidemiology and Evaluation (EEC), of the University teaching hospital of Nancy. The main objective was to describe the quality of life of the living donors having given a kidney for more than a year and less than 5 years. The secondary objective was to contribute to the knowledge of the main factors associated to the living kidney donor quality of life, one year after the donation. Participants had to be living in France at the time of the donation which had taken place between June 30(th), 2005 and March 1(st), 2009. A folder gathering various self-administrated questionnaires was sent to the place of residence of the donor between March and April, 2010. These data were completed by medical data collected near the transplantation centres by the Agency of biomedecine within the framework of the register CRISTAL. They included the characteristics of the donation and of the donor at the very time of the donation, 3 months after the donation and at the last annual assessment. Three living donors in four, that is 501 persons, agreed to fully participate. They constituted a representative national sample of all the living donors of this period. The non participants were younger (4.5 years on average) and had a less adequate annual follow-up. The women were more represented (61 %) than men. The median age was 53 years. More of 2/3 were employed at the time of the survey. The three main categories of donors were ascendants (36 %), collateral (33 %) and spouses (26%). The donation decision was taken without hesitation (94 %) and at an early stage of the evolution of the recipient renal disease (64 %). The delivered information was considered globally satisfactory except for the painful consequences and for the scar. The living donors were, long after their donation, in an excellent physical health state according to the SF36 summarized physical score and this especially when they were old as compared to the same age and sex general population. This phenomenon highlights the drastic selection of the potential donors. The only factor influencing the level of long term physical health was the surgical technique: the 261 subjects having undergone a coelioscopy had less often presented post operative pain (OR=0.5; 0.3-0.8; P<0.002) and had more often recovered completely without any residual pain (OR=1.7; 1.2-2.5; P<0.004). The quality of life mental dimension according to the SF36 summarized mental score was very close to that of the same age and sex of the general population although a slightly lower. It is influenced by characteristics related to the way the donation had been lived, particularly the understanding of their donation by their circle of acquaintances (average score 74.2/100), the perception of a feeling of owing on behalf of the recipient (46.5 %) and the fact of having lived a competition to be retained as the donor (for 266 cases another potential donor did exist and 21 lived the donation as a strong competition). More than 84 % of the donors was still followed by a healthcare professional at the time of the survey. The main expressed complaints concern the quality of the medical follow-up (70 donors expressed themselves openly on this topic) and the pain and scar after effects of the intervention. In spite of the surgical complications, of the dissatisfactions regarding their medical follow-up, of dismissals or of necessary adjustments of their professional life (13 %), of their difficulties to carry heavy loads, of sometimes complex relations with the recipient (23 % positive, 10 % negative) or their circle of acquaintances, of expenses non reimbursement and of losses of salary (12 %), they would be 95 % to recommend the donation and if it was to be redone 98 % would do it again! Benefits brought to the recipient won largely over the encountered difficulties. This retrospective and cross-sectional study allows to state recommendations which have to be confirmed by the 2009-2012 longitudinal study: to favour the coelioscopy which offers an advantage in terms of less frequent pain and a better post operative recovery, to better understand the phenomena of competition between potential and donors recipients, to improve the information about the potential consequences of the donation on the pain and on the scar, to inform the donor about the importance to associate the proxies with the decisionmaking or at least with the discussion and finally to improve the society recognition of the donation.
authors: S
authors: S
authors: Briançon
authors: L
authors: L
authors: Germain
authors: C
authors: C
authors: Baudelot
authors: A
authors: A
authors: Bannay
authors: J-M
authors: JM
authors: Virion
authors: M
authors: M
authors: Thuong
mesh_terms: D000328:Adult; D000533:Altruism; D001007:Anxiety / Q000209:etiology / Q000523:psychology; D001828:Body Image; D003430:Cross-Sectional Studies; D003625:Data Collection; D003657:Decision Making; D003863:Depression / Q000209:etiology / Q000523:psychology; D005260:Female; D005602:France; D006801:Humans; D016030:Kidney Transplantation; D019520:Living Donors / Q000523:psychology* / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D009392:Nephrectomy / Q000523:psychology*; D011183:Postoperative Complications / Q000209:etiology / Q000523:psychology; D011788:Quality of Life; D012189:Retrospective Studies; D012649:Self Concept; D011795:Surveys and Questionnaires